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This website offers an informative article explaining how the field of informatics is rapidly advancing with technology along with the legal and ethical challenges related to various topics. This article explains the issues created by the use of technology in healthcare on the back of the profession of informatics. Providers and patients currently face legal and ethical issues are patient information protection, patient safety related to technical errors, liability, risk assessment, and many others.
Some legislation that is in place to combat these issues are the HITECH act, the HIPPA act, and the Food and Drug Administration Safety and Innovation Act.

https://study.com/academy/lesson/ethical-legal-issues-in-healthcare-informatics.html

This video explains how healthcare practices and policies are being created to deal with legal and ethical issues with technology use in the healthcare field. The use of the software is for approved personnel only that are not allowed to share private patient information by law. By leaving patient charts open on the computer and walking away from it, this is a violation of HIPPA and can cause unintentional harm to patients.

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This video is very informative about how to visualize data with the U.S. census bureau in your area. This video explains the resource to use which is data.census.gov. Once on that website, you can look at the data visualization profiles that include data by county, and state. Some available data are charts and maps for socioeconomic, demographics, and housing information. This information can be very useful for you to understand your communities demographics which can help you to provide a higher quality of care.

https://www.ahrq.gov/data/visualizations/index.html

This link is to the Agency for Healthcare Research and Quality's interactive data visualization. This resource of enables researchers and policy makers to view the specific trends that is going on in healthcare today. This website provides and displays a variety of topics that is important to trend as it reflects the current driving forces effecting the quality of care for our patients. This interactive data visualization makes healthcare leaders understand and use current data to make changes to the current standards of care to improve safety.

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How to Visualize Data for Your Area on data.census.gov

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This video does a wonderful job simply explaining the differences between exploratory data and explanatory data highlighting the key differences and unique characteristics of each. Exploratory data analysis is more done behind the scenes where you are looking for relationships within the raw data or any hidden insights. This is where visualizations of this data is not to be perfected for presentation, but created more to find questions to ask about the collected data. Explanatory analysis is done after the answer to those questions created in the exploratory analysis. Explanatory analysis is where visualizations are created to be presented to an audience to tell a story of the insights found to answer the created question of the data. This video then goes on to explain the five steps of data analysis, including extraction of data, cleaning of data, exploring, analyzing and sharing the findings.

https://youtu.be/fkhkvJSHivE

This video explains briefly the basics of the fundamentals of data analysis. First this video explains the difference between data analytics and data analysis. Data analytics is the broad field of the use of tools and data to help make smart business decisions. Data analysis actually a subset of data analytics that focuses on specific processes. This video then states the basic steps of data analytics, starting with the first step which is problem understanding. Second step is data collection that can be collected manually or digitally. Exploratory analysis is the next step used to find missing values, variables and correlations that can be useful. Then data visualization is used to see the findings in the exploratory data analysis. The next step is machine learning orders where the discovered findings of the data in the visualization is fed to machine learning models to make proper predictions. Data analysis is a smaller scale where collected data goes under exploratory analysis, visualization, and then explanatory analysis prior to being shared with an audience.

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Exploratory vs  Explanatory Analysis wvgBSMks4p8 [Business Analytics Nanodegree]

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The use of privacy practices are terms that are given to patients that describe their rights and standards that are to be upheld by providers and the software that is to protect the private health information on their EHR. There are many steps that are in place to protect patient's information on their electronic health records. This includes health care providers such as myself, nurses and doctors having access controls to get inside the patient's EHR. This includes usernames and passwords on the EHR system. Encryption is another method used to protect patient information. This is used by the software harboring the patient's EHR scrambling that information so that nobody without the special password is able to see any information this includes cyber hackers. Other software programs are used to track and surveillance the amount and identity of people who access the patients EHR, including what they look at and for how long. These steps are ensured to keep patient information in EHR/s private and secure.

https://youtu.be/YDuzHzGc5y8

This video was created by a company that is an electronic medical record and medical practice management account. The company called charm health sells their EHR system along with the policies and practices needed to keep patient information private and safe. This video discusses how to set a password policy within your practice, how to set a two step authentication factor and how to set an auto logoff time to prevent unverified eyes to see information on the EHR if accidentally left up while the provider walks away from the computer. These steps have been created to aide in the security and privacy of patient health information on computers from their EHR. A potential problem that may occur when using a new EHR system is not having these steps on in the software, making it so EHR information might not be protected. When there is any use of a new EHR system, it is very important to ensure the privacy and security steps are engaged within the software to protect patient information.

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Electronic Health Records: Privacy and Security

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This video explains the processes that are in place to improve safety of electronic health records. This Video explains how the clinical decision support systems, barcode administration along with electronic medication administration records impact the safety of health informatics technology.  This video also explains how with every use of health information technology use is guided by the six aims for healthcare.  These aims are safe, effective, patient-centered, timely, efficient, and equitable. These aims are to aid in the usability and improvement of quality of care for our patients. Although all of these health information technology safety systems are in place, there still are errors and safety issues with the use of EHR's and medical technology systems.

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Medicine and Health Sciences at Bethel University

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https://www.jmir.org/2020/6/e17708/

This journal article was published by the Journal of Medical Internet Research. This study involved 5 different focus groups of a consumer of mobile health apps that help patients with chronic health conditions self-manage their own care. This app is aimed in self management of HIV associated non aids. This app uses video information provider technology to help patients self monitor symptoms of this chronic illness. This study showed that the participants in the finished clinical trial of this mobile health app found it useful in monitoring their symptoms and improved communication with their providers. This health app technology utilizes smartphones that are now a part of everyday life for American's and people in most developed countries. With most people having smartphones, this utilization of mobile health apps increases health care accessibility and usability. This focus group helped to gain insights into the future of mobile health apps and the benefits that can have with patient's self managing their health care.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5171509/

This article was a discussion review of past information and literature of consumer health informatics form the past 25 years and what the future challenges hold. The past 25 years of consumer health informatics was based on the concept of patients being able to actively participate and make choices in their own health care based on the use of informatic tools, systems and technologies. This article explained the beginning of consumer informatics consisting of printed health information that was available to patients. The field rapidly advanced with technology with the internet, community chat groups, social media and telehealth/ mobile health apps.

Demiris, G. (2016). Consumer Health Informatics: Past, Present, and Future of a Rapidly Evolving Domain. Yearbook of Medical Informatics, 25(S 01), S42–S47. https://doi.org/10.15265/iys-2016-s005

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Original Paper

¹ College of Nursing, University of Florida, Gainesville, FL, United States

² School of Nursing, Columbia University, New York, NY, United States

Corresponding Author:

Rebecca Schnall, PhD, MPH

School of Nursing

Columbia University

560 West 168th Street

New York, NY, 10032

United States

Phone: 1 2123426886

Email: rb897@columbia.edu

Background: Mobile health (mHealth) apps have the potential to be effective tools for encouraging patients with chronic diseases to self-manage their health. The success of mHealth apps is related to technology acceptance and its subsequent use by intended consumers. Therefore, it is essential to gain insights from consumers' perspectives about their use of mHealth apps in daily life.

Objective: The purpose of this work was to understand consumers' perspectives on use of a self-management app following completion of a clinical trial that tested the efficacy of the app for improving health outcomes.

Methods: We conducted five focus groups with paricipants of a clinical trial (NCT03182738) who were randomized to use the video information provider (VIP) for HIV-associated nonAIDS (HANA) conditions app (VIP-HANA) or an attention control app. Thematic analysis was conducted, and the themes were organized according to the two key constructs of the technology acceptance model framework: perceived usefulness and perceived ease of use.

Results: Thirty-nine people living with HIV (20 from the intervention group and 19 from the control group) participated in the focus group sessions. Of the eight themes identified from focus group data, the five themes related to perceived usefulness were: (1) self-monitoring HIV-related symptoms of HANA conditions, (2) enhanced relationship with clinical providers, (3) improvement in physical and emotional health, (4) long-term impact of self-care strategies on improvement in symptoms of HANA conditions, and (5) inspired lifestyle changes to manage symptoms. The three themes related to perceived ease of use were: (1) easy to navigate, (2) avatar personalization, and (3) privacy/confidentiality maintained even when changing the location of app use.

Conclusions: Perceived ease of use was similar in both study groups but perceived usefulness differed between study groups. Participants in both study groups found the VIP-HANA app to be useful in monitoring their symptoms and enhancing communication with their clinical care providers. However, only intervention group participants perceived the app to be useful in improving overall health and long-term symptom management. Findings from this study highlight factors that are essential to ensure the usefulness of self-management apps and facilitate sustained use of mHealth apps for people living with chronic illnesses.

J Med Internet Res 2020;22(6):e17708

doi:10.2196/17708

Keywords

With the widespread proliferation of smartphones, the use of mobile technology has rapidly increased in health care [,]. Consumer health informatics tools such as mobile health (mHealth) apps have the potential to be effective tools to encourage patients with chronic diseases to self-manage their health [-]. The video information provider (VIP) for HIV-associated nonAIDS (HANA) conditions app (VIP-HANA) is an mHealth app that was developed to help people living with HIV self-manage their symptoms by providing self-care strategies []. Development of the VIP-HANA app is described elsewhere []. In short, the VIP-HANA app is comprised of 728 self-care strategies for the following 28 HANA condition-related symptoms: fatigue, depression, muscle aches, difficulty falling asleep, anxiety, difficulty staying asleep, difficulty remembering, neuropathy, difficulty concentrating, decreased sex drive, diarrhea, maintaining an erection, shortness of breath, constipation, dry mouth, clumsiness, weight loss, dizziness, heartburn, dry eyes, changes in appetite, ringing in ear, cough, nausea/vomiting, fever, difficulty with urination, speech difficulties, and pain during sex []. The 728 self-care strategies were tailored based on the symptom, gender, race/ethnicity, and HANA condition of each user. An avatar guides users through the app. Patients then receive self-care strategies with animated videos for ameliorating their symptoms. Users review their symptom experience over time with symptom reports, set a weekly email reminder to complete sessions in the app, and email/download the history of their reported symptoms and suggested self-care strategies [].

Two versions of the app were created to assess the efficacy of the VIP-HANA app in improving the symptom burden in a 6-month randomized controlled trial (RCT) (NCT03182738) that included 100 people living with HIV with HANA conditions (50 randomly assigned to the intervention group, 50 assigned to the control group). All participants were asked to log in at least once per week. Both study groups received weekly symptom assessment questions through the VIP-HANA app, yet only the intervention group participants were provided with the self-care strategies. presents a comparison of the two versions of the VIP-HANA app features. Participants in both groups were given US $5 per week for their time and data costs associated with completing the weekly symptom assessments.

According to a recent US national survey of mHealth app use, approximately half (46%) of the respondents reported downloading a health app but were no longer using it or had uninstalled it []. Given that the success of mHealth apps is related to the acceptance of technology and its subsequent use by intended consumers, there is a need to gain in-depth insights from consumers' perspectives about use of mHealth apps in their daily life. Accordingly, the purpose of this study was to understand consumers' perspectives on mHealth use (VIP-HANA app) following an RCT of an HIV symptom self-management intervention for people living with HANA conditions.

Sampling and Recruitment

Procedures

The Institutional Review Board of Columbia University Medical Center reviewed and approved all research activities. We conducted three focus group sessions with intervention group participants (N=20) and two focus groups sessions with control group participants (N=19). Prior to the focus group sessions, all participants were provided an explanation of the study procedures and completed a signed consent form. Using open-ended questions via a semistructured focus group guide designed based on the app's features/functionality (), a moderator (a faculty member at Columbia University School of Nursing) facilitated the focus group sessions, and participants were encouraged to discuss issues regarding their perceptions related to use of the VIP-HANA app (intervention/control group versions). All focus group sessions were audio-recorded. Data collection continued until saturation of themes was reached. Participants were compensated with US $30 for their time.

Focus group guide based on 6-month experience of using the video information provider for HIV-associated nonAIDS conditions (VIP-HANA) app.
Experience Using VIP-HANA

Please describe your experience using the VIP-HANA app in social settings.
Probe: where and when did you use it most (house/workplace/clinic/café; after breakfast/when commuting, etc) and why?

How did this fit into your lifestyle and schedule?

Please describe your experience navigating the app pages.
Probe: basic structure of the app

After your first app use, how easy/difficult was it for you in follow-up uses?

What are your thoughts about the design of the VIP-HANA app?
Probe: main logo/avatars; font/color; progress bar; Remember Me (save ID/password); Log-In Help; Continue/Skip button

Please describe your experience with any technical issues.
Probe: Log-In, crash, Back button, Continue/Skip button, How Our App Works, reminder/email, error message

(Intervention group only)

What are your thoughts about the videos displayed in the VIP-HANA app?
Probe: watching videos vs reading the content; videos with sounds, the type of sounds; effect of data plan on watching the videos

What was your experience using the app to review your symptoms and self-care strategies (=Your History)?

Impact of VIP-HANA

How did this app help you gain information about relieving your symptoms?

How do you think that your symptoms changed after using the VIP-HANA app for 6 months?

How confident are you in your ability to self-manage your symptoms?

What are some of the ways that your health might benefit through the use of VIP-HANA?
Probe: changes of current personal, professional, or health care provider relationships

Please describe how the app did/can change your quality of life.

Textbox 1. Focus group guide based on 6-month experience of using the video information provider for HIV-associated nonAIDS conditions (VIP-HANA) app.

Data Analysis

‎
Figure 1. Technology acceptance model (TAM).
View this figure

Audio recordings from the focus groups were transcribed. Thematic analysis was used to explore significant themes with similar patterns across focus group sessions. Research team members (HC, TP, and GF) independently reviewed the transcripts at least twice, and two research team members (TP and GF) generated a set of codes through a combination of inductive and deductive content analysis [-]. A codebook was developed using a Microsoft Excel spreadsheet, and free text excerpted from the transcripts was entered into the codebook followed by each of the themes. Coding discordance between TP and GF was reconciled by a third researcher (HC). Guided by the TAM framework () [], each theme in the codebook was categorized into the two constructs of perceived usefulness and perceived ease of use.

Sample

A total of 39 people who completed the 6-month trial participated in the five focus group sessions. The mean age of the study participants was 55 years (SD 10.70). Additional characteristics of the study sample are presented in .

Table 1. Characteristics of the study participants (N=39).

Characteristic

All participants (N=39)

Intervention (N=20)

Control (N=19)

Hispanic/Latino ethnicity, n (%)

13 (33)

6 (30)

7 (37)

Other (eg, ADAP a, Veteran's Association, multiple)

6 (15)

3 (15)

3 (16)

a ADAP: AIDS drug assistance program.

Main Themes

A total of eight themes related to use of the VIP-HANA app were identified. The themes were organized by the two key constructs of the TAM framework [], including five themes related to perceived usefulness and three themes related to perceived ease of use. Two themes to enhance the acceptance of the app were additionally identified.

Perceived Usefulness

The five themes related to perceived usefulness were: (1) self-monitoring HIV-related symptoms of HANA conditions, (2) enhanced relationship with clinical providers, (3) improvement in physical and emotional health, (4) long-term impact of self-care strategies on improvement in symptoms of HANA conditions, and (5) inspired lifestyle changes to manage symptoms.

Self-Monitoring HIV-Related Symptoms of HANA Conditions

Participants in both the intervention and control groups felt that the app was helpful for improving self-monitoring of their symptoms. A control group participant expressed that the app helped them realize the frequency of certain symptoms they were having, by stating:

I found that it really kept me in touch with my symptoms. And a lot of things were happening that I really didn't realize until I started using the app.
[FG2]

An intervention group participant mentioned:

The app shows you certain things that you can have, and what you can do. And you work with that. And it's been great for me. I was getting more confident with tracking and managing my symptoms.
[FG3]

Moreover, intervention group participants described enjoyment in tracking their HANA conditions:

So for those of us that do have secondary illnesses such as diabetes, asthma, high blood pressure, and so forth and so on, the app was a great thing, and not just helping us navigate the system and our bodies as far as HIV is concerned, but helped us in those other issues as well.
[FG1]

And she said the app is wonderful... for diabetes, hepatitis C, and for the different harm reduction. We know what symptoms I have.
[FG3]

Enhanced Relationship With Clinical Providers

Participants in both the intervention and control groups stated that they showed the app to their doctors/clinical therapists to guide their conversations and share their symptom reports, which empowered them to better communicate with their clinical providers and enrich their relationship. An intervention group participant described:

The changes that I made were, the app was very useful in that, in conjunction with my doctor. Because I also showed this to my doctor... And they all agreed that it's a wonderful thing.
[FG1]

A control group participant stated:

I liked the app because it was times I wanted to ask my doctor questions, but I didn't. But by doing this here app, it made me take a pen and paper and write down what I want to say to her next time I see her.
[FG2]

Improvement in Physical and Emotional Health

Participants in the intervention group noted improvements in their health as a result of app use. Participants commented that the app helped them work through their emotional issues. An intervention group participant stated:

It is not just HIV health. It is diabetes, asthma, high blood pressure... and so on... Not just your physical and your medications and stuff like that. But things that you can do to make yourself happier, better, more social.
[FG1]

Long-Term Impact of Self-Care Strategies on Improvement in Symptoms of HANA Conditions

Intervention group participants stated that they continued to use the self-care strategies for their symptoms even after the study was over. They considered that the self-care strategies resulted in a lasting improvement of their symptoms and therefore they continued to use them. An intervention group participant mentioned:

When I go through stress, I get those migraine headaches. In the app, it tells you to relax, turn off the TV. Turn off everything and just be calm in a dark room. And that still helps me. I am still doing that.
[FG1]

Inspired Lifestyle Changes to Manage Symptoms

Participants in the control group noted that the symptom questions on the VIP-HANA app helped them to think about their recent symptoms and inspired lifestyle changes. For example, some control group participants stated:

I remember one time, I was really depressed that week. And I put down real severe depression. And it made me think... So I'm trying to figure out why am I depressed? What made me depressed this week? What should I do? What changes?
[FG2]

But when you're looking at, when you're pressing this button several times every, several times a month, with the same thing, it reminds you. You need to really get serious about what you've been thinking about all this time.
[FG2]

Perceived Ease of Use

The three major themes related to perceived ease of use were: (1) easy to navigate, (2) avatar personalization, and (3) privacy/confidentiality maintained even when changing the location of app use.

Easy to Navigate

Participants in both the intervention and control groups found that the VIP-HANA app was easy to navigate, and they were able to use the app without assistance and did not experience technical issues. An intervention group participant stated:

Nothing hard at all. I am not very good to the tech... but this app, easy to get to start... easy to go to the next... very easy to move forward.
[FG3]

A control group participant described:

Yeah. The app I thought was pretty easy to navigate through. And the questions were basically always the same. I didn't need any help although I am not good at technology.
[FG2]

Avatar Personalization

Participants in the intervention and control groups noted the usefulness of an avatar to guide them through the VIP-HANA app and help them navigate through the app. They also noted that the avatar promoted their engagement with the app. Some participants in the intervention group mentioned:

I feel like I connected to it more by choosing the one that best looked like me or was fitted to me.
[FG1]

When you see it in the app, where you're actually seeing the cartoon character [avatar], get up and going. It encourages you that you can get up and go. I think it was very practical.
[FG5]

Some participants in the control group stated:

I think when you look at it [avatar], it's more personal. It's about you. And I think that it's good for your psyche to realize that you've got to really take care of yourself.
[FG2]

The app I thought was pretty easy to navigate through because of the avatar. The avatar looks like me... myself!
[FG4]

I was going to mention that the whole thing is laid out pretty attractively. The little avatar made it, to me, it made it almost like a game.
[FG2]

Privacy/Confidentiality Maintained Even When Changing Location of App Use

Participants in both the intervention and control groups felt comfortable using the app in a variety of locations ranging from their home to doctor's offices and in public spaces (ie, everywhere). They thought that the app was very discrete and did not disclose their HIV status to others if they could see the app on the screen. Several participants in the intervention group described this aspect:

To me, I feel like it was enough discretion in the app that if I wanted to explain it to somebody, because I was okay pulling out anywhere... everywhere...
[FG1]

I feel that that was really good, in the sense of you can do it really anywhere.
[FG5]

Some participants in the control group stated:

One of the good things about the program, it doesn't mention anything related to HIV. The reason... If someone want to get into your phone, nobody can access personal information related to the app.
[FG2]

I was happy because I can use it anytime and anywhere; at work, on the train.
[FG4]

Additional Comments to Enhance App Acceptance

Need for Updates of Self-Care Strategies and Videos

Participants in the intervention group expressed their desire for the app to include more self-care strategies and realistic videos. Participants felt that the app questions (symptoms) and suggestions (self-care strategies) were particularly useful for people living with HIV who were newly diagnosed with HIV/AIDS. They thought that the animated videos showing the suggestions were too simple or not serious enough in some cases. Some participants in the intervention group described:

When I look at the study you have to say that it's really geared more to like an HIV 101 plan where it's just basic stuff... For a person that's newly diagnosed and don't know a lot of things about HIV, I think it's the best thing for them.
[FG1]

Some of it [animated videos] was unrealistic. If you don't have the HIV or the pain or things that we actually experience as patients, you really couldn't understand how serious sometimes it is. It felt to me like they downplayed our experiences with those videos.
[FG3]

Request for Additional Functionality of Symptom Reports

Participants in the control group wanted the app to have an additional functionality to track their symptom reports so that they do not have to remember their weekly answers to the symptom questions (eg, what symptoms they had), as the app feature of symptom reports was limited for the intervention group participants only in this study. For example, a control group participant stated:

I don't remember there being an ability to be able to say, to run a report, so to speak, and say; between January and March, I had dry eyes this many times during the month... if I can print something out or if I can open it on the phone and show it to the doctor like that, that would be a nice addition to what you already have.
[FG2]

Principal Findings

With the exponential increase of mobile technology use in health care, mHealth apps can be a promising consumer health informatics tool for health behavior change and self-management. Although existing evidence supports the use of mHealth apps to improve health outcomes in people with chronic diseases [-], there has been limited assessment of consumers' experience following their use of these apps during a clinical trial. Given the current landscape of discontinuation of mHealth apps use [], it is imperative to understand how consumers are interacting with the apps in their daily life in an effort to accelerate acceptance of the apps by the consumers as well as ensure their subsequent use. To better understand consumers' use of a self-management app, we included both intervention and control group participants following completion of an RCT that tested the efficacy of the app for improving health outcomes. We captured valuable perspectives of both study group participants on their app use using focus groups guided by a theory-driven framework. This approach facilitated gaining an in-depth understanding of the key factors that would have a critical influence on adoption of the app [], which is a significant strength of our study.

mHealth apps should be visually appealing to consumers [], but more fundamentally should contain evidence-based health information that consumers can use to improve their health. Participants considered that the app could help improve their health and manage symptoms through the use of self-care strategies. The VIP-HANA app was developed by employing evidence from patient-centered outcomes research studies [], and the HIV symptom self-care strategies provided within the app were tailored based on symptoms, gender, race/ethnicity, and HANA condition [,]. To our knowledge, no mHealth intervention offers health information on how to ameliorate HIV symptoms specifically for people living with HIV with HANA conditions; the VIP-HANA app therefore represents a first step in the development and dissemination of a consumer health informatics tool that incorporates evidence-based self-care strategies.

Limitations

There are some limitations to the generalizability of our results. Study participants who participated in the focus groups might have been those who were most likely to be engaged with and used the app who had been retained in the 6-month trial. More than half of our study participants were men, African American/Black, those who had completed some high school or less, and those who reported an annual income of less than US $20,000. Therefore, the Hawthorne effect might influence the study findings of focus groups []. We designed the semistructured focus group guide based on our app's features and functionality, and used open-ended questions to minimize/eliminate concern about the Hawthorne effect.

Conclusions

Understanding factors influencing the use of patient-centered tools is critical. This study highlights participants' experiences, attitudes, and perceptions of their use of a behavioral intervention evaluated in a clinical trial. Participants were able to integrate the app into their daily routine, and used the app to support, track, monitor, and self-manage HIV symptoms related to HANA conditions. Although perceived ease of use was similar in both study groups, perceived usefulness differed between the groups. Participants in both groups found the VIP-HANA app to be useful in monitoring their symptoms of HANA conditions and enhancing communication with their clinical providers over time, but only the intervention group participants perceived the app to be useful for improving overall health and long-term symptom management in the HIV care continuum. Findings from this study highlight factors that are essential to ensure the usefulness of self-management apps to promote sustained use of the apps for people living with chronic illnesses.

Acknowledgments

This research was supported by the National Institute of Nursing Research, National Institutes of Health under award number R01 NR015737 (principal investigator RS) and through award K24NR018621 (principal investigator RS). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Nursing Research, National Institutes of Health. We are grateful to Dr. Suzanne Bakken for leading the focus group sessions.

Conflicts of Interest

None declared.
‎

Multimedia Appendix 1

Comparison of the VIP-HANA app features in the intervention and control group versions.
DOCX File , 459 KB

‎

HANA: HIV-associated nonAIDS

mHealth: mobile health

RCT: randomized controlled trial

TAM: technology acceptance model

VIP-HANA: video information provider for HIV-associated nonAIDS conditions

Edited by G Eysenbach; submitted 07.01.20; peer-reviewed by YC Kato-Lin, V Strotbaum; comments to author 10.03.20; revised version received 07.04.20; accepted 21.04.20; published 15.06.20

©Hwayoung Cho, Tiffany Porras, Gabriella Flynn, Rebecca Schnall. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 15.06.2020.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

Background: Mobile health (mHealth) apps have the potential to be effective tools for encouraging patients with chronic diseases to self-manage their health. The success of mHealth apps is related to technology acceptance and its subsequent use by intended consumers. Therefore, it is essential to gain insights from consumers' perspectives about their use of mHealth apps in daily life.

Objective: The purpose of this work was to understand consumers' perspectives on use of a self-management app following completion of a clinical trial that tested the efficacy of the app for improving health outcomes.

Methods: We conducted five focus groups with paricipants of a clinical trial (NCT03182738) who were randomized to use the video information provider (VIP) for HIV-associated nonAIDS (HANA) conditions app (VIP-HANA) or an attention control app. Thematic analysis was conducted, and the themes were organized according to the two key constructs of the technology acceptance model framework: perceived usefulness and perceived ease of use.

Results: Thirty-nine people living with HIV (20 from the intervention group and 19 from the control group) participated in the focus group sessions. Of the eight themes identified from focus group data, the five themes related to perceived usefulness were: (1) self-monitoring HIV-related symptoms of HANA conditions, (2) enhanced relationship with clinical providers, (3) improvement in physical and emotional health, (4) long-term impact of self-care strategies on improvement in symptoms of HANA conditions, and (5) inspired lifestyle changes to manage symptoms. The three themes related to perceived ease of use were: (1) easy to navigate, (2) avatar personalization, and (3) privacy/confidentiality maintained even when changing the location of app use.

Conclusions: Perceived ease of use was similar in both study groups but perceived usefulness differed between study groups. Participants in both study groups found the VIP-HANA app to be useful in monitoring their symptoms and enhancing communication with their clinical care providers. However, only intervention group participants perceived the app to be useful in improving overall health and long-term symptom management. Findings from this study highlight factors that are essential to ensure the usefulness of self-management apps and facilitate sustained use of mHealth apps for people living with chronic illnesses.

J Med Internet Res 2020;22(6):e17708

doi:10.2196/17708

Keywords

With the widespread proliferation of smartphones, the use of mobile technology has rapidly increased in health care [,]. Consumer health informatics tools such as mobile health (mHealth) apps have the potential to be effective tools to encourage patients with chronic diseases to self-manage their health [-]. The video information provider (VIP) for HIV-associated nonAIDS (HANA) conditions app (VIP-HANA) is an mHealth app that was developed to help people living with HIV self-manage their symptoms by providing self-care strategies []. Development of the VIP-HANA app is described elsewhere []. In short, the VIP-HANA app is comprised of 728 self-care strategies for the following 28 HANA condition-related symptoms: fatigue, depression, muscle aches, difficulty falling asleep, anxiety, difficulty staying asleep, difficulty remembering, neuropathy, difficulty concentrating, decreased sex drive, diarrhea, maintaining an erection, shortness of breath, constipation, dry mouth, clumsiness, weight loss, dizziness, heartburn, dry eyes, changes in appetite, ringing in ear, cough, nausea/vomiting, fever, difficulty with urination, speech difficulties, and pain during sex []. The 728 self-care strategies were tailored based on the symptom, gender, race/ethnicity, and HANA condition of each user. An avatar guides users through the app. Patients then receive self-care strategies with animated videos for ameliorating their symptoms. Users review their symptom experience over time with symptom reports, set a weekly email reminder to complete sessions in the app, and email/download the history of their reported symptoms and suggested self-care strategies [].

Two versions of the app were created to assess the efficacy of the VIP-HANA app in improving the symptom burden in a 6-month randomized controlled trial (RCT) (NCT03182738) that included 100 people living with HIV with HANA conditions (50 randomly assigned to the intervention group, 50 assigned to the control group). All participants were asked to log in at least once per week. Both study groups received weekly symptom assessment questions through the VIP-HANA app, yet only the intervention group participants were provided with the self-care strategies. presents a comparison of the two versions of the VIP-HANA app features. Participants in both groups were given US $5 per week for their time and data costs associated with completing the weekly symptom assessments.

According to a recent US national survey of mHealth app use, approximately half (46%) of the respondents reported downloading a health app but were no longer using it or had uninstalled it []. Given that the success of mHealth apps is related to the acceptance of technology and its subsequent use by intended consumers, there is a need to gain in-depth insights from consumers' perspectives about use of mHealth apps in their daily life. Accordingly, the purpose of this study was to understand consumers' perspectives on mHealth use (VIP-HANA app) following an RCT of an HIV symptom self-management intervention for people living with HANA conditions.

Sampling and Recruitment

Procedures

The Institutional Review Board of Columbia University Medical Center reviewed and approved all research activities. We conducted three focus group sessions with intervention group participants (N=20) and two focus groups sessions with control group participants (N=19). Prior to the focus group sessions, all participants were provided an explanation of the study procedures and completed a signed consent form. Using open-ended questions via a semistructured focus group guide designed based on the app's features/functionality (), a moderator (a faculty member at Columbia University School of Nursing) facilitated the focus group sessions, and participants were encouraged to discuss issues regarding their perceptions related to use of the VIP-HANA app (intervention/control group versions). All focus group sessions were audio-recorded. Data collection continued until saturation of themes was reached. Participants were compensated with US $30 for their time.

Focus group guide based on 6-month experience of using the video information provider for HIV-associated nonAIDS conditions (VIP-HANA) app.
Experience Using VIP-HANA

Please describe your experience using the VIP-HANA app in social settings.
Probe: where and when did you use it most (house/workplace/clinic/café; after breakfast/when commuting, etc) and why?

How did this fit into your lifestyle and schedule?

Please describe your experience navigating the app pages.
Probe: basic structure of the app

After your first app use, how easy/difficult was it for you in follow-up uses?

What are your thoughts about the design of the VIP-HANA app?
Probe: main logo/avatars; font/color; progress bar; Remember Me (save ID/password); Log-In Help; Continue/Skip button

Please describe your experience with any technical issues.
Probe: Log-In, crash, Back button, Continue/Skip button, How Our App Works, reminder/email, error message

(Intervention group only)

What are your thoughts about the videos displayed in the VIP-HANA app?
Probe: watching videos vs reading the content; videos with sounds, the type of sounds; effect of data plan on watching the videos

What was your experience using the app to review your symptoms and self-care strategies (=Your History)?

Impact of VIP-HANA

How did this app help you gain information about relieving your symptoms?

How do you think that your symptoms changed after using the VIP-HANA app for 6 months?

How confident are you in your ability to self-manage your symptoms?

What are some of the ways that your health might benefit through the use of VIP-HANA?
Probe: changes of current personal, professional, or health care provider relationships

Please describe how the app did/can change your quality of life.

Textbox 1. Focus group guide based on 6-month experience of using the video information provider for HIV-associated nonAIDS conditions (VIP-HANA) app.

Data Analysis

‎
Figure 1. Technology acceptance model (TAM).
View this figure

Audio recordings from the focus groups were transcribed. Thematic analysis was used to explore significant themes with similar patterns across focus group sessions. Research team members (HC, TP, and GF) independently reviewed the transcripts at least twice, and two research team members (TP and GF) generated a set of codes through a combination of inductive and deductive content analysis [-]. A codebook was developed using a Microsoft Excel spreadsheet, and free text excerpted from the transcripts was entered into the codebook followed by each of the themes. Coding discordance between TP and GF was reconciled by a third researcher (HC). Guided by the TAM framework () [], each theme in the codebook was categorized into the two constructs of perceived usefulness and perceived ease of use.

Sample

A total of 39 people who completed the 6-month trial participated in the five focus group sessions. The mean age of the study participants was 55 years (SD 10.70). Additional characteristics of the study sample are presented in .

Table 1. Characteristics of the study participants (N=39).

Characteristic

All participants (N=39)

Intervention (N=20)

Control (N=19)

Hispanic/Latino ethnicity, n (%)

13 (33)

6 (30)

7 (37)

Other (eg, ADAP a, Veteran's Association, multiple)

6 (15)

3 (15)

3 (16)

a ADAP: AIDS drug assistance program.

Main Themes

A total of eight themes related to use of the VIP-HANA app were identified. The themes were organized by the two key constructs of the TAM framework [], including five themes related to perceived usefulness and three themes related to perceived ease of use. Two themes to enhance the acceptance of the app were additionally identified.

Perceived Usefulness

The five themes related to perceived usefulness were: (1) self-monitoring HIV-related symptoms of HANA conditions, (2) enhanced relationship with clinical providers, (3) improvement in physical and emotional health, (4) long-term impact of self-care strategies on improvement in symptoms of HANA conditions, and (5) inspired lifestyle changes to manage symptoms.

Self-Monitoring HIV-Related Symptoms of HANA Conditions

Participants in both the intervention and control groups felt that the app was helpful for improving self-monitoring of their symptoms. A control group participant expressed that the app helped them realize the frequency of certain symptoms they were having, by stating:

I found that it really kept me in touch with my symptoms. And a lot of things were happening that I really didn't realize until I started using the app.
[FG2]

An intervention group participant mentioned:

The app shows you certain things that you can have, and what you can do. And you work with that. And it's been great for me. I was getting more confident with tracking and managing my symptoms.
[FG3]

Moreover, intervention group participants described enjoyment in tracking their HANA conditions:

So for those of us that do have secondary illnesses such as diabetes, asthma, high blood pressure, and so forth and so on, the app was a great thing, and not just helping us navigate the system and our bodies as far as HIV is concerned, but helped us in those other issues as well.
[FG1]

And she said the app is wonderful... for diabetes, hepatitis C, and for the different harm reduction. We know what symptoms I have.
[FG3]

Enhanced Relationship With Clinical Providers

Participants in both the intervention and control groups stated that they showed the app to their doctors/clinical therapists to guide their conversations and share their symptom reports, which empowered them to better communicate with their clinical providers and enrich their relationship. An intervention group participant described:

The changes that I made were, the app was very useful in that, in conjunction with my doctor. Because I also showed this to my doctor... And they all agreed that it's a wonderful thing.
[FG1]

A control group participant stated:

I liked the app because it was times I wanted to ask my doctor questions, but I didn't. But by doing this here app, it made me take a pen and paper and write down what I want to say to her next time I see her.
[FG2]

Improvement in Physical and Emotional Health

Participants in the intervention group noted improvements in their health as a result of app use. Participants commented that the app helped them work through their emotional issues. An intervention group participant stated:

It is not just HIV health. It is diabetes, asthma, high blood pressure... and so on... Not just your physical and your medications and stuff like that. But things that you can do to make yourself happier, better, more social.
[FG1]

Long-Term Impact of Self-Care Strategies on Improvement in Symptoms of HANA Conditions

Intervention group participants stated that they continued to use the self-care strategies for their symptoms even after the study was over. They considered that the self-care strategies resulted in a lasting improvement of their symptoms and therefore they continued to use them. An intervention group participant mentioned:

When I go through stress, I get those migraine headaches. In the app, it tells you to relax, turn off the TV. Turn off everything and just be calm in a dark room. And that still helps me. I am still doing that.
[FG1]

Inspired Lifestyle Changes to Manage Symptoms

Participants in the control group noted that the symptom questions on the VIP-HANA app helped them to think about their recent symptoms and inspired lifestyle changes. For example, some control group participants stated:

I remember one time, I was really depressed that week. And I put down real severe depression. And it made me think... So I'm trying to figure out why am I depressed? What made me depressed this week? What should I do? What changes?
[FG2]

But when you're looking at, when you're pressing this button several times every, several times a month, with the same thing, it reminds you. You need to really get serious about what you've been thinking about all this time.
[FG2]

Perceived Ease of Use

The three major themes related to perceived ease of use were: (1) easy to navigate, (2) avatar personalization, and (3) privacy/confidentiality maintained even when changing the location of app use.

Easy to Navigate

Participants in both the intervention and control groups found that the VIP-HANA app was easy to navigate, and they were able to use the app without assistance and did not experience technical issues. An intervention group participant stated:

Nothing hard at all. I am not very good to the tech... but this app, easy to get to start... easy to go to the next... very easy to move forward.
[FG3]

A control group participant described:

Yeah. The app I thought was pretty easy to navigate through. And the questions were basically always the same. I didn't need any help although I am not good at technology.
[FG2]

Avatar Personalization

Participants in the intervention and control groups noted the usefulness of an avatar to guide them through the VIP-HANA app and help them navigate through the app. They also noted that the avatar promoted their engagement with the app. Some participants in the intervention group mentioned:

I feel like I connected to it more by choosing the one that best looked like me or was fitted to me.
[FG1]

When you see it in the app, where you're actually seeing the cartoon character [avatar], get up and going. It encourages you that you can get up and go. I think it was very practical.
[FG5]

Some participants in the control group stated:

I think when you look at it [avatar], it's more personal. It's about you. And I think that it's good for your psyche to realize that you've got to really take care of yourself.
[FG2]

The app I thought was pretty easy to navigate through because of the avatar. The avatar looks like me... myself!
[FG4]

I was going to mention that the whole thing is laid out pretty attractively. The little avatar made it, to me, it made it almost like a game.
[FG2]

Privacy/Confidentiality Maintained Even When Changing Location of App Use

Participants in both the intervention and control groups felt comfortable using the app in a variety of locations ranging from their home to doctor's offices and in public spaces (ie, everywhere). They thought that the app was very discrete and did not disclose their HIV status to others if they could see the app on the screen. Several participants in the intervention group described this aspect:

To me, I feel like it was enough discretion in the app that if I wanted to explain it to somebody, because I was okay pulling out anywhere... everywhere...
[FG1]

I feel that that was really good, in the sense of you can do it really anywhere.
[FG5]

Some participants in the control group stated:

One of the good things about the program, it doesn't mention anything related to HIV. The reason... If someone want to get into your phone, nobody can access personal information related to the app.
[FG2]

I was happy because I can use it anytime and anywhere; at work, on the train.
[FG4]

Additional Comments to Enhance App Acceptance

Need for Updates of Self-Care Strategies and Videos

Participants in the intervention group expressed their desire for the app to include more self-care strategies and realistic videos. Participants felt that the app questions (symptoms) and suggestions (self-care strategies) were particularly useful for people living with HIV who were newly diagnosed with HIV/AIDS. They thought that the animated videos showing the suggestions were too simple or not serious enough in some cases. Some participants in the intervention group described:

When I look at the study you have to say that it's really geared more to like an HIV 101 plan where it's just basic stuff... For a person that's newly diagnosed and don't know a lot of things about HIV, I think it's the best thing for them.
[FG1]

Some of it [animated videos] was unrealistic. If you don't have the HIV or the pain or things that we actually experience as patients, you really couldn't understand how serious sometimes it is. It felt to me like they downplayed our experiences with those videos.
[FG3]

Request for Additional Functionality of Symptom Reports

Participants in the control group wanted the app to have an additional functionality to track their symptom reports so that they do not have to remember their weekly answers to the symptom questions (eg, what symptoms they had), as the app feature of symptom reports was limited for the intervention group participants only in this study. For example, a control group participant stated:

I don't remember there being an ability to be able to say, to run a report, so to speak, and say; between January and March, I had dry eyes this many times during the month... if I can print something out or if I can open it on the phone and show it to the doctor like that, that would be a nice addition to what you already have.
[FG2]

Principal Findings

With the exponential increase of mobile technology use in health care, mHealth apps can be a promising consumer health informatics tool for health behavior change and self-management. Although existing evidence supports the use of mHealth apps to improve health outcomes in people with chronic diseases [-], there has been limited assessment of consumers' experience following their use of these apps during a clinical trial. Given the current landscape of discontinuation of mHealth apps use [], it is imperative to understand how consumers are interacting with the apps in their daily life in an effort to accelerate acceptance of the apps by the consumers as well as ensure their subsequent use. To better understand consumers' use of a self-management app, we included both intervention and control group participants following completion of an RCT that tested the efficacy of the app for improving health outcomes. We captured valuable perspectives of both study group participants on their app use using focus groups guided by a theory-driven framework. This approach facilitated gaining an in-depth understanding of the key factors that would have a critical influence on adoption of the app [], which is a significant strength of our study.

mHealth apps should be visually appealing to consumers [], but more fundamentally should contain evidence-based health information that consumers can use to improve their health. Participants considered that the app could help improve their health and manage symptoms through the use of self-care strategies. The VIP-HANA app was developed by employing evidence from patient-centered outcomes research studies [], and the HIV symptom self-care strategies provided within the app were tailored based on symptoms, gender, race/ethnicity, and HANA condition [,]. To our knowledge, no mHealth intervention offers health information on how to ameliorate HIV symptoms specifically for people living with HIV with HANA conditions; the VIP-HANA app therefore represents a first step in the development and dissemination of a consumer health informatics tool that incorporates evidence-based self-care strategies.

Limitations

There are some limitations to the generalizability of our results. Study participants who participated in the focus groups might have been those who were most likely to be engaged with and used the app who had been retained in the 6-month trial. More than half of our study participants were men, African American/Black, those who had completed some high school or less, and those who reported an annual income of less than US $20,000. Therefore, the Hawthorne effect might influence the study findings of focus groups []. We designed the semistructured focus group guide based on our app's features and functionality, and used open-ended questions to minimize/eliminate concern about the Hawthorne effect.

Conclusions

Understanding factors influencing the use of patient-centered tools is critical. This study highlights participants' experiences, attitudes, and perceptions of their use of a behavioral intervention evaluated in a clinical trial. Participants were able to integrate the app into their daily routine, and used the app to support, track, monitor, and self-manage HIV symptoms related to HANA conditions. Although perceived ease of use was similar in both study groups, perceived usefulness differed between the groups. Participants in both groups found the VIP-HANA app to be useful in monitoring their symptoms of HANA conditions and enhancing communication with their clinical providers over time, but only the intervention group participants perceived the app to be useful for improving overall health and long-term symptom management in the HIV care continuum. Findings from this study highlight factors that are essential to ensure the usefulness of self-management apps to promote sustained use of the apps for people living with chronic illnesses.

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Usability of a Consumer Health Informatics Tool Following Completion of a Clinical Trial: Focus Group Study

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Background: Mobile health (mHealth) apps have the potential to be effective tools for encouraging patients with chronic diseases to self-manage their health. The success of mHealth apps is related to technology acceptance and its subsequent use by intended consumers. Therefore, it is essential to gain insights from consumers' perspectives about their use of mHealth apps in daily life.

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This video explains the process and benefits of using the telemedicine technology for cardiology care. This technology improves the availability of patients getting appointments and improves continuity of care. This technology also allows the practitioner to see the patient inside their own home environment and assess the surroundings for possible allergy triggers. This telemedicine technology  makes it easier to connect with providers but also makes it easier and saves time to connect with specialties. Specialty providers such as cardiologists are able to assess patient labs, imaging and cardiac tests with telemedicine technology during or prior to appointments.

https://www.sciencedirect.com/science/article/pii/S1525861021002589

This article is a literature review on the use of telemedicine and telehealth inside nursing homes. This literature review inspects the usefulness and how this technology improves access to care and patient outcomes. Using telehealth this literature review has shown preliminary evidence of telehealth supporting specialty consults improving access to care in nursing homes, improved financial incentives and improved patient outcomes. This study was performed with reviewing qualitative and quantitative studies of telemedicine in nursing homes (Groom, et.al., 2021). This study was also shown to aid in the inequity of health care access in nursing homes during the Covid-19 pandemic. This study was conducted by registered nurses.

Groom, L. L., McCarthy, M. M., Stimpfel, A. W., & Brody, A. A. (2021). Telemedicine and Telehealth in Nursing Homes: An Integrative Review. Journal of the American Medical Directors Association, 22(9), 1784-1801.e7. https://doi.org/10.1016/j.jamda.2021.02.037

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What to Expect During Your Cardiology Telemedicine Visit

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https://youtu.be/fmrgAjJXHUU

This Youtube video is from the Office of National Coordinator of Health IT in the U.S. government. This video examines the progress that the country has made, and how the doctors use their EHR's of their patients and are able to share and see information with other specialists such as cardiologists which then increases their knowledge of what is going on with the patient. By having the access of seeing what the specialists are doing with their patients, this then enables the provider to make more informed decisions and improves the quality of the care that they receive. They explain that the health information exchange is necessary for provides to give the patients the most complete and holistic care. This video also explains how helpful the state's health information exchange was during the hurricane sandy in NY state, when many hospitals had to close due to damage, the people seeking care at other places had all of their current information at opened hospitals due to that network.

https://youtu.be/aJb6Dov0jlM

This youtube video offers interesting information about Arizona State's health information exchange. As most states have their own health information exchange platforms for the medical institutions in that state to use, this video explains the patient rights involved with who can access their personal health information. This video starts off with explaining how the HIE enables providers to have more complete care which then gives the patients better care and better outcomes. This video then goes on to explain how patient rights are protected by the state and federal law. They explain how when each provider first begins to participate with the HIE platform, each patient gets a notice from that practice explaining their rights under the law of the state of Arizona, then it gives them the choice to opt out of their information being sent to the HIE. This gives the patient the choice to either have their information shared with the states HIE or refuse it. This video also explains that the type of data that is shared with the HIE is both physical health information along with general behavioral health information. It then explains how substance abuse information from a federally assisted substance abuse program is specially protected under federal law making it so that only people who get direct consent from the patient are able to see this information or only during emergencies. There is also a choice to opt out from letting this information be shared with the HIE system even during an emergency situation.

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Office of the National Coordinator for Health IT

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Health Information Exchange: Making a Difference

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https://www.healthit.gov/buzz-blog/electronic-health-and-medical-records/emr-vs-ehr-difference

This website offers great information on the definitions and contrasts as to what an EHR, electronic health record and what an EMR or electronic medical record is. Although both of these terms seem and sound very similar to one another, the comparison is quite different. As this website explains, the EMR or electronic medical record is a basically the digitized version of a patient's chart in a place such as a clinic or primary care office. Although this electronic record holds much valuable information such as patient's past and current vital sings, diagnoses and prescribed prescriptions that they have taken in the past and currently are taking, this information is unable to travel outside of the physical office itself. The lack of interoperability makes it very difficult to share with outside specialist providers if needed. An EHR however includes everything that the EMR does, and more. The difference is that the EHR is all of the vital patient data that is taken from the clinic or primary care providers office at their annual check ups and screenings, storing their current and past health information, and allows this record to be shared, viewed and used in all providers outside of that one office. The EHR can show the specialist provider information from the primary provider and visa versa, allowing for all providers to add to and review the journey of the patients health. This in turn provides a higher quality of coordinated care.

Garrett, P. (2011, August 26). EMR vs EHR – What is the Difference? Health IT Buzz. https://www.healthit.gov/buzz-blog/electronic-health-and-medical-records/emr-vs-ehr-difference

https://youtu.be/SlQ60KaLeHg

This youtube video explains the other side of EHR's or electronic health records. This video talks about the unintended safety issues that are harming patient's care but technological issues that providers are unaware of while they are providing care. This video provides an example of an issue effecting patient care. This video goes through the scenario of two different patients that both come in to the ER at the same time, both needing chest x rays and when the provider is clicking to see the results of one patient, during the double click in between the first and second click, the EHR auto refreshes with another patients information changing the position of the current patient's chest x ray results which in turn causes the provider to accidentally open up the wrong patient's chest x ray. This leads to the provider examining the wrong chest x ray that shows it is clear, instead of the actual patients x ray that shows her pneumonia, she then discharges home with no antibiotics.

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https://youtu.be/z1BjRy7JWNc

This video is a simple and clear explanation of what meaningful use is, why it exists and how it is used to improve the healthcare system. It explains the background of the HITECH act, using 3 stages to encourage EHR use in medical institutions. The video explains that meaningful use improves the healthcare system with the adoption of EHR's to make safer and easier to share critical medical information from provider to provider, provider to patient, and provider to insurance companies. Making the care provided to patients more patient centered improves health outcomes. The three stages of meaningful use are to first get an EHR system, then get tools for it to expand and improve the coordination of care, and finally to update and adopt more advanced technologies that have proven to improve patient outcomes such as e-prescriptions.

https://youtu.be/8WdA916Bi1E

This video explains the implementation of meaningful use in the patient perspective. This video explains how meaningful use of EHR and how the ease of access of the patients health information improves his care by making it easier to securely chat with his doctor, review his own medical information, make appointments when they are needed, and to help providers choose correct medications for this patient based on his allergies that are flagged in his electronic chart when prescribing medications. This video goes through the journey of the patient, "Tyler," who is messaged on his health portal app of his primary care provider that he is due for a check up and flu shot. The use of this EHR technology enables Tyler to get care on the proper schedule recommended by his doctor, when Tyler otherwise would not be aware that he was due. The use of his EHR also enabled him to check in, update any health information or medication changes prior to the appointment so that the provider was able to give a more accurate and thorough exam.

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Week 4 Transforming Data, Information, Knowledge, and Wisdom

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Week 4 Transforming Data, Information, Knowledge, and Wisdom

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The Online Journal of Issues in Nursing wrote this article on something that I have learned this week in class called the Nelson data to wisdom continuum. This theoretical frame work defines the scope of practice in nursing informatics. According to Nelson, (2020), "One must always remember that the capabilities of computers (which are always changing) do not define the scope of practice for nursing informatics; rather, it is how nurses use these tools that define their practice. In turn, if we do not understand how nurses at all levels of knowledge and experience use computers to support their practice, we cannot design automated systems that truly support the goals of nursing." This tool enables the use of data to be better defined. This is done by putting the raw data collected into context with information connected to those values. That information then can be interpreted into knowledge giving that information value. That value can then be assessed and categorized based on personal and past experiences. This wisdom is the key that unlocks to power of data giving it both value and breadth in relation to our healthcare system's quality and goals for improvement, (Nelson, 2020).

Nelson, R., (July 21, 2020) "Informatics: Evolution of the Nelson Data, Information, Knowledge and Wisdom Model: Part 2" OJIN: The Online Journal of Issues in Nursing Vol. 25, No. 3. DOI: 10.3912/OJIN.Vol25No03InfoCol01

https://youtu.be/Frvgl1jqcDw

This you tube video video provides a brief overview on why hospital systems are improving their electronic medical record platforms and or why they are transitioning from outdated paper charting to electronic. This is being done because transitions to digital electronic health record systems has improved data managing and financial management systems for hospitals so much that it has now been this country's new gold standard. This technology has increased financial revenue in hospitals due to its increased accuracy of treatment and medication documentation for our patients which also increases the quality of their care by securely sharing the facts of the patients hospital stay and care plan.
This video also highlights the potential problems that hinder a smooth and successful transition to and EHR. Strengthening Your EHR Conversion, (2022) states the problems with EHR conversions as," Improper integration of EHR data with current hospital systems, lack of staff that understand the new EHR system, EHR data quality, inability to perform data migration from older EHR systems, inability to keep protected health information safe." This video also goes through the general process of how an EHR conversion is completed throughout hospital systems. Creating an in house team that is competent in the knowledge of how your hospital system works financially, what documentation and data systems that are currently being used and how to transfer that current data into the new system accurately. It also important for this team to know how the clinical team completes their processes and how the clinical billing system works for that organization. That team collaborating with the other key stakeholders such as hospital management, clinical personal and Information technologists need to create a personalized EHR implementation plan. That plan is generally consisting of gathering and organizing current data, figuring out which parts of the new data system needs to be individualized which makes this new system fit the needs of the organization. Once the new system is ready, the first initial live of the new program must have a team recording the kinks and issues that need to be fixed so that the employees using this system can complete their jobs efficiently and safely, (Strengthening Your EHR Conversion, 2022).

Strengthening Your EHR Conversion. (2022, July 19). [Video]. YouTube. Retrieved October 5, 2022, from https://www.youtube.com/watch?v=Frvgl1jqcDw&feature=youtu.be

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Ramona Nelson, PhD, BC-RN, ANEF, FAAN
Citation: Nelson, R., (July 21, 2020) "Informatics: Evolution of the Nelson Data, Information, Knowledge and Wisdom Model: Part 2" OJIN: The Online Journal of Issues in Nursing Vol. 25, No. 3.

DOI: 10.3912/OJIN.Vol25No03InfoCol01
https://doi.org/10.3912/OJIN.Vol25No03InfoCol01

Nursing informatics is the nursing specialty that focuses on using the tools and processes inherent in automation to achieve the goals of nursing. Computers are excellent devices for managing the smallest of details, thereby supporting a safer, more efficient, and more effective quality healthcare system. At the same time, they are able to manage enormous databases of information and knowledge. But in the end - at the point of patient outcome - what is important is the ability to apply these tools in helping patients, consumers, families and communities.

One must always remember that the capabilities of computers (which are always changing) do not define the scope of practice for nursing informatics; rather, it is how nurses use these tools that define their practice. In turn, if we do not understand how nurses at all levels of knowledge and experience use computers to support their practice, we cannot design automated systems that truly support the goals of nursing.

The Data, Information, Knowledge and Wisdom Model (DIKW Model) provides a theoretical framework for defining the scope of practice for nursing informatics. In Part 1 of this two-part column, the driving forces for the creation of the DIKW Model were explained. Here in Part 2, the development of the model, and the evolution of the figures used to illustrate the model, are described. The figure used in this column, illustrating the model is still a 'work in process.' This column concludes by discussing limitations of the current figure and encouraging future leaders to develop a figure that more fully and effectively articulates the rich and complex relationships within the model, and in turn the scope of practice for nursing informatics.

Regarding the history of the DIKW Model and Related Figures, the initial attempt to articulate the concepts within the DIKW Model was a brief article defining the concepts of Data-Information-Knowledge-Wisdom ( Nelson & Joos, 1989). This publication did not include a model, but rather a table briefly explaining the concepts (See Table). The third column of the Table also identified the relationship between the concepts of data, information, knowledge, and wisdom and the various levels of computer systems.
Table. Terms, Meaning and Related Computer System
Over the next decade subsequent publications, for example, ( Joos, et al., 1996; Nelson, 2001) expanded on the four concepts, but did not create a figure showing the relationships between the concepts.

The first figure (See Figure 1) illustrating the model focused on the overlapping relationships between the concepts of data, information, knowledge and wisdom. The overlapping nature of the relationships between these concepts was depicted in the overlapping circles and in the words used to define the concepts. For example, the word organizing is included with both data and with information. This first version of the model ( Nelson, 2002) was published by Mosby, in a health informatics textbook ( Englebardt & Nelson, 2002).

Figure 1. Nelson Data to Wisdom Continuum.

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Used with the permission of Ramona Nelson, President Ramona Nelson Consulting at ramonanelson@verizon.net. Copyright 2002. All rights reserved.

At the time this textbook was written, Mosby was owned by Harcourt Brace & Company. In 2001, Reed Elsevier acquired Harcourt Brace & Company and Mosby then joined Elsevier. During this period, I was a member of the American Nurses Association (ANA) task force that had been charged with revising the 2002 ANA Scope and Standards of Practice for Nursing Informatics. In that role, I requested and received permission from Elsevier/Mosby for the ANA to print a modified version of Figure 1 that was subsequently titled Figure 2. Figure 2, as printed in this column, is a copy of that figure as it was printed in the 2002 ANA Scope and Standards for Nursing Informatics ( ANA, 2002), including the permission that was used in that publication..

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This second figure was an improvement on the first figure in that the interactions between and across the concepts was more effectively articulated. The double-headed arrow moving through each of the concepts signified that the flow of interactions moved throughout the continuum from data to wisdom. The oval with a dashed line labeled constant flux illustrated that this is an open system with constant interaction between the internal and external environment. In other words, context is important when using the model to understand specific phenomenon.

Shortly after the ANA publication, the copyright to the book was returned from Elsevier to the authors and I now own the copyright to these two figures as well as Figure 3, which was created in 2013. Since the copyright was returned, anyone who has made a request has been given permission to use any or all of the figures in publications, presentations and research free of charge. The only limitation is that permission to modify the figure is never granted and there is always a request to acknowledge the copyright. Many people have excellent ideas related to the model and how it may be used, but I believe permitting the publication of several different figures reflecting different interpretations of the DIKW model, all of which are identified as being the model, will create confusion - not clarity.

There have been publications that have included an inaccurate illustration of the model. The best source for ensuring you are viewing an accurate illustration of the model is the various editions of the ANA Standards of Practice for Nursing Informatics and my own publications.

While Figure 2 was a significant improvement, it still did not fully project the richness and complexity of the interactions within the model. It also did not appear to generate an appreciation for the importance of context as presented by the interaction within and between the internal and external environment. Figure 3 was developed and first published in a discussion of the theoretical foundations of health informatics presented in Chapter 2 of the textbook, Health Informatics: An Interprofessional Approach ( Nelson & Staggers, 2014).
Figure 3. Revised Nelson Data to Wisdom Continuum.
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Each revision of the model was created to more effectively illustrate the interacting relationships across the continuum and the inter- and intra-environmental factors that influence movement across and within the data to wisdom continuum. However, the current Figure depicting the Model continues to be limited by the reality of illustrating a four-dimensional phenomenon with a two-dimensional medium. Print, be it on screen or paper, is two dimensions. However, the Nelson DIKW continuum should first be conceptualized as an open living system with all the characteristics of an open living system. With such a system, time, the fourth dimension, is also part of the picture. So now, the question remains what would an automated three-dimensional model (maybe a hologram) look like, if it was fully functioning and changing over time?

Ramona Nelson, PhD, BC-RN, ANEF, FAAN
Email: ramonanelson@verizon.net

Dr. Nelson holds a baccalaureate degree in nursing from Duquesne University, and master's degrees in both nursing and information science, as well as a PhD in education, from the University of Pittsburgh. Prior to her current position as President of her own consulting company, she was Professor and Chair of the Department of Nursing at Slippery Rock University in Pennsylvania. In the early 1980's, one of Dr. Nelson's employee benefits, while teaching at the University of Pittsburgh, was the opportunity to take university courses for only $5.00 a credit. After taking courses in computer assisted instruction and theory for information science, she recognized these tools (computers) just might be somewhat useful at the bedside and in the classroom. She has been exploring and discovering just how useful they can be ever since.

Dr. Nelson's more recent research and publications focus on the specialty area of health informatics. Health Informatics: An Interprofessional Approach (2014), co-authored with Nancy Staggers, received the first place American Journal of Nursing Book of the Year award for Information Technology/Informatics. The second edition (2018) continues today as a primary textbook in the field of health informatics. Based on her contributions to nursing and health informatics she has been inducted into both the American Academy of Nursing and the first group of fellows in the National League for Nursing Academy of Nursing Education. She has also been recognized as a pioneer within the discipline by the American Medical Informatics Association. Her goal in serving as Editor of OJIN's Informatics Column is to open a discussion about how we as nurses in the inter-professional world of healthcare can maximize the advantages and manage the challenges that computerization brings to our practice.

American Nurses Association. (2002). Scope and standards of nursing informatics practice. Washington, D.C.: American Nurses Publishing.

Englebardt, S. & Nelson, R. (Eds.) (2002) Health care informatics: An interdisciplinary approach. St. Louis: Mosby-Year Book, Inc.

Joos, I., N. Whitman, M. Smith, & R. Nelson. (1996 ) Computers in small bytes: A computer workbook. 2nd edition. New York: National League for Nursing.

Nelson, R. (2001). Data processing. In V. Saba & K. McCormick (Eds.), Essential of Computers for Nurses (page 85-100). New York : McGraw Hill.

Nelson, R. (2002). Major theories supporting health care informatics. In S. Englebardt & R. Nelson (Eds), Health care informatics; An interdisciplinary approach (page 3-28). St. Louis: Mosby-Year Book, Inc.

Nelson, R, and Joos, I (1989). On language in nursing: From data to wisdom. Pennsylvania League for Nursing PLN Visions, 1(5), 6.

Nelson, R. & Staggers, N. (2014). Theoretical Foundations of Health Informatics., In R. Nelson & N. Staggers, (Eds.), Health Informatics: An Interprofessional Approach(page18-39). St Louis: Elsevier/Mosby.

© 2020 OJIN: The Online Journal of Issues in Nursing

Article published July 21, 2020

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Informatics: Evolution of the Nelson Data, Information, Knowledge and Wisdom Model: Part 2

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Ramona Nelson, PhD, BC-RN, ANEF, FAAN Citation: Nelson, R., (July 21, 2020) "Informatics: Evolution of the Nelson Data, Information, Knowledge and Wisdom Model: Part 2" OJIN: The Online Journal of Issues in Nursing Vol. 25, No. 3. DOI: 10.3912/OJIN.Vol25No03InfoCol01 https://doi.org/10.3912/OJIN.Vol25No03InfoCol01 Nursing informatics is the nursing specialty that focuses on using the tools and processes inherent in automation to achieve the goals of nursing.

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This article is a useful tool to explain what terminology standards are, why we need standardized terminology in health informatics and linked a list of current common terminology standards that are used in health information and technology. This article was on the Health Information and management Systems Society which is an organization and advisor globally to innovate the health care system by educating the best practices through health informatics and technology. This article introduces standardized terminology as the foundation of interoperability due to its proven improvement of the efficacy of exchanging information. If health terminology becomes standardized it will not only improve the way providers communicate with each other improving patient safety, but it will also improve how health electronic record systems communicate with others, (HIMSS.org, 2019).

Admin. (2019, December 10). Terminology standards. HIMSS. Retrieved October 5, 2022, from https://www.himss.org/terminology-standards

https://youtu.be/uWGmAZOX6gU

This Ted Talk x video on you tube is commentated by Dr. Rhonda Hughes at the University of South Carolina. This 10 minute video explains the importance of linking big data with systems across health care organizations and adding more variables to track to better understand and improve health care outcomes for our patients. That is how we will broaden our view of how and why our patients get to their outcomes that they do. We want to understand what more variables can we discover that enhances the patient's chances of not being readmitted to the hospital after a procedure. She asks the questions what other variables can we introduce to research their effect on adverse events during hospitalizations? All of this data and technology that already exists has created the reality of diagnosing and treating disease processes unlike we could have ever imagined prior due to precision health. Precision health uses big data to look at a specific organ unlike we have ever been able to before. This in turn allows a specialist provider to tailor a specific treatment plan for individual patients improving the specificity in health care which improves patient outcomes, (Tedx Talks, 2018).

TEDx Talks. (2018, December 5). Improving health outcomes with big data | Ronda Hughes | TEDxUofSC [Video]. YouTube. Retrieved October 5, 2022, from https://www.youtube.com/watch?v=uWGmAZOX6gU&feature=youtu.be

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These standards address a fundamental requirement for effective communication - the ability to represent concepts in an unambiguous manner between a sender and receiver of information. Most communication between health information systems relies on structured vocabularies, terminologies, code sets and classification systems to represent health concepts.

Why Do We Need Standard Terminology in Health Informatics?

Standard terminology provides a foundation for interoperability by improving the effectiveness of information exchange. Using standard terminology should be a simple and logical step in health IT. However, with the complexities of many diagnoses systems, clinical narrative transferred via PDF format, various coding systems, and the cost of digitizing volumes of reference material/dictionaries, it isn't as easy as you would think.

Structured terms provide a means for organizing information and serve to define the semantics of information using consistent and computable mechanisms. Therefore, health information specialists need the tools to focus on delivering terminology through a common delivery system to the software vendors and institutions in a consistent, high quality and verifiable fashion. Vendors and institutions need to be able to write applications that access terminology content, be it SNOMED, immunization data, demographics, LOINC, or a coding system local to the institution in exactly the same way.

See below for some of the common terminology standards used in health information and technology.

LOINC

Logical Observation Identifiers Names and Codes (LOINC®) is a universal code system for identifying health measurements, observations, and documents. These codes represent the "question" for a test or measurement. LOINC codes can be grouped into Laboratory and Clinical tests, measurements and observations. Visit LOINC's database to explore these data standards.

UCUM

The Unified Code for Units of Measure (UCUM) is a code system intended to include all units of measures used in international science, engineering and business to facilitate unambiguous electronic communication of quantities together with their units.

SNOMED CT

Systematized Nomenclature of Medicine--Clinical Terms (SNOMED CT) is a comprehensive clinical health terminology product, owned and distributed by SNOMED International. It enables the consistent, processable representation of clinical content in electronic health records. These codes often represent the "answer" for a test or measurement to the LOINC "question" code. Explore these standards.

RxNorm

RxNorm provides normalized names for clinical drugs and links its names to many of the drug vocabularies commonly used in pharmacy management and drug interaction software. By providing links between these vocabularies, RxNorm can mediate messages between systems not using the same software and vocabulary. RxNorm now includes the National Drug File - Reference Terminology (NDF-RT) from the Veterans Health Administration. NDF-RT is a terminology used to code clinical drug properties, including mechanism of action, physiologic effect, and therapeutic category. Explore the RxNorm standards database.

RadLex

RadLex is a unified language of radiology terms for standardized indexing and retrieval of radiology information resources. It unifies and supplements other lexicons and standards, such as SNOMED-CT and DICOM. It is managed by the Radiological Society of North America.

MEDCIN

MEDCIN is a medical terminology, maintained by Medicomp Systems, that encompasses symptoms, history, physical examination, tests, diagnoses and therapies.

ICD-10

ICD-10 is the 10th revision of the International Statistical Classification of Diseases and Related Health Problems(ICD), a medical classification list by the World Health Organization (WHO). It contains codes for diseases, signs and symptoms, abnormal findings, complaints, social circumstances, and external causes of injury or diseases.

CPT®

Current Procedural Terminology (CPT®) is a code set, maintained by the American Medical Association (AMA) used to bill outpatient and office procedures.

HCPCS

The Healthcare Common Procedure Coding System (HCPCS) is a set of healthcare procedure codes based on CPT that is leveraged for Medicare reimbursement.

CDC CVX and MVX

The Centers for Disease Control and Prevention (CDC) provide a number of code sets for vaccines (Vaccines Administered ( CVX)) and manufacturers (Manufacturers of Vaccines ( MVX)). These codes can be used in immunization messages. Explore the CVX database.

NDC

The National Drug Code (NDC) is maintained by the Food and Drug Administration (FDA) and provides a list of all drugs manufactured, prepared, propagated, compounded or processed for commercial distribution. Search the NDC database.

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These standards address a fundamental requirement for effective communication - the ability to represent concepts in an unambiguous manner between a sender and receiver of information. Most communication between health information systems relies on structured vocabularies, terminologies, code sets and classification systems to represent health concepts.

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This website has been a very helpful and clarifying tool that explains the TIGER initiative's objectives, what the actual program is and the evolution of this initiative. This article written by Toria Morawski and Joyce Sensemeier on nursekey.com has outlined what TIGER actually is. The Technology Informatics Guiding Education Reform is an initiative started to create a body of evidence based research to implement a health care industry standard for information technology used in the health care settings that will update systems that are proven to improve patient safety and quality of care. This whole movement was started in the year 2005 at Johns Hopkins University School of Nursing. The need for technology integration in the health care system across the board was a desperate need that was well known t advance the health care field around the world. It was then when an invitational summit was created and resulted in many health care companies and organizations pledging to pursue the goals of integrating technology that shown with evidence based practice improves health care safety and efficiency.

Morawski, T., & Sensmeier, J. (2021, July 29). The evolution of the tiger initiative. Nurse Key. Retrieved October 1, 2022, from https://nursekey.com/the-evolution-of-the-tiger-initiative/

https://youtu.be/72OtVROdPLA

This youtube video of one of the creators of the TIGER initiative gives a brief but concise understanding of what the TIGER steps are including and how they are hoping to effect healthcare for the clinicians and the educators. The main person speaking in this video is Ursla Hubner who is one of the original cofounders of the TIGER Initiative. She explains how our health care system needs an organization of information technologists and health care providers along with educators to collaborate to incorporate the best systems and algorithms to not only enhance the safety of the current health care that is being provided, but to also enhance the data to research propelling our health care system into a future of massively improved efficiency and patient safety. This will be done by using the existing data, assess the current effects of our limited technology in the healthcare system and compare that to the effects it has on our patient care. This evidence will urge health organizations and legislature to continue to push for the advancement of technology in health care.

Inside a movement to revolutionize health informatics education. (2020, November 3). [Video]. YouTube. Retrieved October 5, 2022, from https://www.youtube.com/watch?v=72OtVROdPLA&feature=youtu.be

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In this youtube video Professor Paul Cooper at the Daekin University in Australia. He teaches health informatics and speaker at the Health Informatics Conference 2018. In this video I learned that health informatics is very complex with all of the groundbreaking technologies that are being introduced that come with their glitches and lack of reliability until it becomes more mainstream and mature. Paul Cooper introduces the idea of resilient health where the information technology that is being used has internal systems that self-correct their errors to reduce technology failure related harm to patient safety. This is a fundamental that Paul as a professor is teaching his students about the future continuation of incorporating health information technology in patient's every day lives even when they are not in a health care facility.

undefined [Australasian Institute of Digital Health]. (2018, April 27). What do health informatics students learn? What are the barriers to health informatics in Australia? [Video]. YouTube. Retrieved October 5, 2022, from https://www.youtube.com/watch?v=kDIx5ilB-4g&t=2s

Managing Pandemic Responses with Health Informatics - Challenges for Assessing Digital Health Technologies - PubMed (nih.gov)

This article looks in depth at the role that health informatics and technologies had during the Covid-19 pandemic response within the Unites States. I never knew how much we relied on health information technology during this pandemic such as tracking trends, comparing the most prevalent comorbidities in COVID related deaths and recovery statistics. These information technologies were what many states in our country used to decide whether or not to open up all businesses, enforce mask mandates, and ultimately let people go back to work with their everyday lives. However, this article highlights what with all of the new technologies that emerged from this pandemic, there still is evaluation that needs to be done to assess the value and efficacy of these technologies. According to Magrabi et al., (2022), "New technologies, particularly those intended for use on a large scale such as digital contract tracing, will require assessment of their usability as well as performance prior to deployment, after which evaluation should shift to using a complex systems paradigm to examine the value of information provided. The success of a digital health technology is dependent on the value of information it provides relative to the sociotechnical context of the setting where it is implemented."

Magrabi, F., Ammenwerth, E., Craven, C. K., Cresswell, K., De Keizer, N. F., Medlock, S. K., Scott, P. J., Wong, Z. S., & Georgiou, A. (2021). Managing Pandemic Responses with Health Informatics - Challenges for Assessing Digital Health Technologies. Yearbook of medical informatics, 30(1), 56–60. https://doi.org/10.1055/s-0041-1726490

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Australasian Institute of Digital Health

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What do health informatics students learn? What are the barriers to health informatics in Australia?