Quality and Safety Education for Nurses (QSEN) - formed by nursing leaders in 2005, in response to a call by the IOM to improve the quality of health care.

QSEN has six competencies:

Each competency is divided into three categories: knowledge, skills, and attitudes. 

The American Association of Colleges of Nursing (AACN) provides accreditation for nursing programs and has developed standards and essentials to the delivery of nursing education which includes education in informatics in the baccalaureate, masters, and doctorates level.

The TIGER Initiative Foundation was formed in 2011. They engage diverse stakeholders to further its mission of advancing the integration of health informatics to transform practice, education, and consumer engagement. 

Its focus is to prepare better clinical workforce to use technology and informatics to improve the delivery of patient care. In 2014, it transitioned to HIMSS (Healthcare Information and Management Systems Society) the leading not-for-profit organization focused on better health through information technology.

Tiger initiative - began in 2005, they recognized needed nurses engaged in the process of placing health information technology throughout the country. 

The seven steps of Tiger include communication and collaboration, Education, Informatics design, Information Technology, culture, management and leadership, and Policy. These key “pillars” are both interdependent and essential for creating an environment that will enable nurses to use informatics to provide safer, higher-quality care. 

Its important to use standardized terminology when documentin problems, interventions, and outcomes in order to compare interventions and their outcomes. 

Data entry should be in defined fields with the use of the same terms and free text should not be an option.

Standard terminology will allow for the retrieval of coded data that is easily compared and easily developed so that we can see the patterns and trends. 

Also, in order to determine how to take an approach on  problem, we need common links and standardization that will allow this data to be stored and retrieved to improve decision making.

There should also be a shared  understanding across the continuum of care.

Big Data- a massive pool of data from multiple sources that can be used to identify and monitor health needs and outcomes. It is most effective if we can all use a standardized terminology. IBM Watson is  one of the most popular tools used to process Big Data.

Organizations like AHRQ and NCQA )National Committee for Quality Assurance), and NSF are looking at different quality measures for auditing quality of service and benchmarking. 

standardized terminology supports research activities by being used to look at data. 

standardized vocabulary should be used to enable and report externally specified health statistics, both clinically and educationally, so that they can be compared. 

standardization should also be used to identify individuals in need of proactive intervention 

so that how to care for individuals is clear.

Terms- words used to refer to a concept (if more than one term for a concept= synonym)

context - needed to interpret a term. if the context is unknown, errors can occur. 

Sometimes a context might be right, but the term is wrong, or there is a translation error.

Example: good- can mean: well-behaved, favorable character, pleasant, satisfactory, deserving of respect.

Synonyms are auspicious, skillful, excellent, just, honest, kind, virtuous, and helpful. 

"good," has all these different meanings. we need to know the context to know which good we're talking about. 

standardized language is important to get the terms all the same, but context also needs to be there so we can understand the meaning.

Example: a data point of 86. 

86 is just a number. We don't know what it means or what to do with it. 

Context- would be that 86 came from a thermometer at 2 o'clock in the afternoon in the month of July in Maine. 

86 now has meaning.

If this is applied to make plans for the day, such as a beach day, the data 86 turned into wisdom which guides us to make choices. 

EHR systems are programmed with algorithms that can provide contexts in order to understand data so that it can be transformed into knowledge and wisdom.

ICD-10 codes are structured data that are used internationally to code medical claims so that a provider can get paid the interventions that are done. 

The first three numbers of an icd10 code is the category and the rest of the number will specify the patient's condition even further. 

Acquiring a new EHR:

 

Changing systems is extremely costly, about a multi-million dollar process.

These characteristics of an organization must be taken into account if considering a new EHR:

size of organization

type

complexity of the organization

unique cultural aspects of the  organization

strategic vision and alignment of the organization as well as the technology department strategic vision and plan

Then, the organization needs to evaluate systems. 

A System Development Life Cycle (SDLC) - a framework that is used when acquiring a new EHR that contains a series of sequential logistical steps to understand the process of developing, implementing, and using an information system.

The processes to acquire a new information system typically start with a Request for Information (RFI)- a document that includes questions answered by vendors, such as vendor experience, product, and patient communication. 

The next step is a Request for Proposal (RFP)- a more complete and formal document that includes cost and financial data and helps  develop a negotiation process. 

If is important that it includes a vendor evaluation criteria to hold the vendor accountable in meeting the customer's needs.

The vendor evaluation criteria includes experience, staff strength, market and industry understanding, service and cost. 

Many organizations will hire a consultant to help with making a choice on a vendor.

Its important to establish a relationship with potential vendors because you have to be in sync with priorities and agree on criteria for a successful implementation.

Once a vendor is chosen, there must be detailed project management plan for implementation with time frames. A consultant can be hired for that or the vendors can help. 

Some important things that need to be planned for a new EHR:

Where hardware and wiring needs to be installed

the roles and responsibilities for every step in that project.

Changes to start using EHR started taking flight when 

George W. Bush established the Office of the National Coordinator for Health IT in 2004 through an executive order. 

In 2009, Obama implemented the American Recovery and Reinvestment Act, which funded many shovel-ready programs.

Then, The Health Information Technology for Economic and Clinical Health (HITECH) Act promoted health information technology and the electronic exchange of information to improve:

*quality health care

*safety

*efficiency 

In 2010 incentive money was needed in order to make this happen. 

Therefore, $30 billion was allocated towards the Centers for Medicare and Medicaid (CMS) incentive program to provide financial incentives to get hospitals and provider practices to implement EHRs.

This program was successful, and by 2014, hospitals had an EHR adoption rate of about 80%. 

Now, 90% of hospital organizations and 60% of physician offices have clinical information systems.

"Meaningful use" was a part of the  CMS  incentive program and it has "four buckets":

Also, meaningful use was divided into three stages:

1. (2011-2012) focused on capturing data and sharing it 
2. (2014) show advanced clinical processes
3.(2016)  demonstrate improved outcomes

More details about Meaningful use Stage 2 Objectives:

*The EHR needed to be able to have patient health information secured. Security risk analysis and security updates must be able to be done in order to protect the patient health information. 

*Clinical decision support: The system needs to have the ability to be used to improve performance using clinical decision supports. 

Example: an alert when you're ordering a medication that their patient has an allergy 

or clinical guidelines embedded in the EHR

*Computerized Provider Order Entry (CPOE) - the physician or the provider has to put medication, laboratory, and radiology orders in the EHR.

Before this, they had to write it down on a piece of paper and someone had to put it on a lab or radiology slip and then take the slip to the lab or radiology department in order for that to be ordered.

There were many transcription errors with this method such as the wrong test being ordereddue to not being able to

read somebody's handwriting, 

Computerized Provider Order Entry reduced a lot of those errors.

*E-prescribing- where you electronically send the prescription to the pharmacy, and the pharmacy accepts it. 

this has reduced a lot of the fraudulent prescriptions because prior to e-prescribing, providers would write out a prescription on a prescription pad, and the patient would take that to the pharmacy. 

Even though security paper was used, people were able to modify those things.

*Health Informatiom Exchange is the EHR ability to  transfer patient's information and summary of what was done for the patient to another setting when referring or transferring the patient to another provider. 

*Patient-specific education:

EHR's ability to have patient-specific education resources that can be printed out and given to the patient. 

*Medication reconciliation: The EHR must have information of the patient's current medications and this must be able to be sent and received to and from different provider settings. Medication reconciliation needs to happen at every encounter. 

*Patient Electronic Access:  Hospitals and providers need to provide patients with the ability to view online, download, transmit their health information, and request health records electronically

within four business days of the information being available to the provider. An example of this would be with the use of patient portals. 

*Secure messaging: 

the ability to use secure messaging to communicate with patients relevant health information. Many people use the patient portal secure messaging feature.

*public health: submitting electronic public health data to a public health agency such as 

electronically transmitting immunization records to a state office that collects immunization information or the electronic reporting of an outbreak of a specific illness.

Meaningful Use has very specific rules and guidelines. 

There are thresholds for each objective and they are measured. The provider must attest that the objectives are being done to get additional reimbursement for them. 

Some organizations have a quality control person  to monitor this. The reimbursements for meeting the Meaningful Use objectives are of a significant financial amount.

*allows doctors, nurses, pharmacists, and other health care providers to securely share a patient's vital medical information electronically. 

*Patient's information about  visits, labs, and X-rays are sent to the HIE

*health information is shared electronically between health care providers before the patient arrives for an appointment or goes to the pharmacy to pick up a medication.

*HIEs connect with hospitals, labs, physician practices, and pharmacies. 

Advantages of HIE:

*reduce the need for patients to transport or relay their: 

***medical history

***lab results/images

***prescriptions 

*Timely sharing of patient information can better inform decision-making at the point of care and allows providers to avoid readmissions and medication errors, improve diagnoses, decrease duplicate testing, all which help save health care dollars.

Every state received funds to modernize how patient health information is shared. 

Each state has adopted a HIE at a different pace, but all have a strategic plan to put one in. 

Maine:

*early adopter of HIE

*almost all hospitals and physician offices participate in some way

In the future, the hope is to connect patients and health plans to the HIE. 

One of the biggest challenges for HIE is to continue to operate.

*All were given grants to get started

*Some have continued to be funded by grants. 

*Some are trying to find ways to monetize their work by charging membership fees or providing other services. 

Today's main HIE offers a robust data analytics service which they charge for.

The HIE is a valuable service, and it is our first attempt to start to collect information.

Data - raw numbers collected and stored at the level of which the unit of analysis was observed. 

*Data must be processed to be of practical use. 

Statistics - analyzing raw data reported in a meaningful format. 

data sets -major unit of data storage and retrieval consisting of collection of data in a prescribed arrangement or format.

*Data sets have documentation, like an owner's manual. 

*These often occur in either another document or an attachment or a tab on the data set itself. 

*Most will tell you what each number in the data set or each condition in the data set is referring to.

*Good data documentation will include:

*the context

*the method it was collected, *protocols

*scale

*software and instruments used in data collection

*detailed outline of data structure

*file types used

*methods used for data validation (how do they know their data is good quality)

*how they clean the data

*how data sources were used

*modification to data over time

(if it's a longitudinal study and things have changed, this needs to be explained)

*data confidentiality, access, and use conditions

Most data sets are results of research and have gone through an internal review board which drives or is requiring them to provide this level of describing confidentiality.

Data documentation

*Metadata is a set of data that describes and gives information about other data. 

data sets:

*data collected to meet the needs of the collector. 

i.e.: researchers 

Organizations may have biases. 

example: pharmaceutical companies who sponsor research they pay for may be biased towards a certain drug

Biases can determine what data is collected, how they are collected, and what is reported. 

Data source notes describe the reasons for the data collection and method used.

Kaiser Family Foundation:

*produces large amount of data sets that are available for no charge. 

*a great place to start looking for data

*variety of topics

*site is easy to read

private data: 

*data sources not available to the public

example: electronic health records protecting patient health information through HIPAA

example: insurance claim data.

Public data:

*available to anyone

*retrievable from many websites

 *reported data  (example: immunization rates might be available from the state)

*Claims data (They are not identifiable)

*Disease registries 

(example: diabetic registry,

The CDC has a lot of these registries)

*Health surveys (example: Nain Survey)

*clinical trials data that are publicly available (example: Kaiser Family Foundation punlishes this type of data)

different types of data:

*administrative data- organizations report this data

(example: H-CUP- free online query system based on data from the Health Care Cost and Utilization Project. It provides access to health statistics and information on hospital inpatient emergency department utilizations. 

States require some diseases to be reported. )

*Claims data - based on ICD-10 code

*the sources of claims data can be obtained by Medicare, Medicaid, and even in some commercial health plans. 

*Disease registries -most of these require some sort of membership or approval. There are cardiac, diabetes, and GI registries available for example

*health surveys- provide an accurate evaluation of population health. (example: Nains) 

*Clinical trial databases- Most are private, some are publicly-funded. 

services provided by telemedicine:

primary care
specialist referral services

i.e.: 

*a primary care health professional providing a consultation with a patient

*a specialist providing a consultation to a physician remotely 

*a provider treating a patient through teleconferincing

PCP can consult a specialist that's far away, maybe the only expert in the world, through interactive video.

Store and forward:
*a recording
*may have diagnostic images
*i.e. cardiac cath videos, vital signs, other patient data for later review

Remote patient monitoring
*another type of patient monitoring
*used a lot in home health
*different devices collect data then send that info to a more central location who can identify and assess it
*example: monitoring a specific vital sign, such as blood pressure, or heart, or EKG, or pacemakers. 

Consumer medical and health information: 

*the use of internet and wireless devices for consumers to obtain specialized health information or online discussions in groups or peer-to-peer support.

examples:
*monitoring CHF to help keep the CHF patient out of the hospital

*Readmissions for hospitalizations of heart failure within 30 days are not reimbursed, much attention has been paid to keeping those patients healthy as possible and in their homes.

Cardiocom now known as Medtronic

*company who puts a blood pressure cuff and scale in a patient's home. 

*asks patient to take their blood pressure and weigh themselves daily. 

*will determine if need intervention

*trends the different data so that you can see how that patient's doingover time. 

*there ia a variety of things you can monitor

*successful in keeping people outof the hospital and understanding how to care for themselves.

telestroke programs:

*Another example of telemedicine 
*usually expert is located in a larger metropolitan area where there are more of a specialty and they provide service through video and through transmission of patient data in order to manage a stroke patient in a remote area.

i.e.: a patient could arrive at an emergency department at a smaller/rural hospital or remote hospital, or a hospital that doesn't have a neurologist on staff, and they just dial up the specialist and they help to treat the patient 

Sunbeam ship- provides telehealth in Maine

Amwell:

*has a number of physicians accessible through computer

*patient selects the physician they want to see. 

*tell them symptoms, and they will offer you treatment through the internet through camera. 

*charge a base rate of usually $50 for a visit.

*other service that Amwell sells is if you have a office practice, they will pick up all of your out-of-office calls. So you could turn over your patients to their service during non-office hours to cover for you. 

*keeps people out of the ER, where it's a more costly level of care.

********
Health informatics is global. 

*Canada is authorizing provincial EHR systems to be standardized, which would be great. 

The National Health Service in UK is one of the most advanced and most ambitious systems, and they have a big project in standardization.

Many countries have the advantage of having a national health service, which really makes standardization much easier than the American system. 

China, the largest populated country, has also made it a top priority for health informatics. 

Japan is trying to get to a fully portable health records, 

Malaysia, as well as Scotland, have efforts in this realm.

key initiatives:

European region: the first health action plan also started about the same time as US.

have opened smart services for their patients

are trying to evaluate and build infrastructure to demonstrate cross-border interoperability. 

US is trying to get interoperability as well.

European Federation for Medical Informatics

*has 30 different countries and 16 working groups

In Asia-Pacific area

*started their initiative in 2005, and they have an 

*Asian Pacific Association of Medical Informatics

*projects include personal health cards, digital clinical histories, electronic prescriptions, internet applications, health portals, social webs, risk management, telemedicine, regional call centers, and digitization of documentation. 

Taiwan

*had one of the  more advanced progress in becoming completely nationalized. 

*have a national health system

*have national health insurance

African region:

*working on digitizing in many different ways. 

*created an organization to help push that forward. 

*underdeveloped countries in Africa still have paper records  

+smartphones are being donated in order to collect some of this public health information. 

World Health Organization:

*supporting e-health initiatives 

*established a global observatory for e-health to monitor and analyze the evolution of e-health

*working with International Health Terminology Standards Development Organisation. 

for standardization of basic terms and include all the different types of languages available.

Global Health Technology Coalition:

*a group of more than 25 non-profit organizations to increase the awareness and the urgent need for technologies that save lives

*funded in part by the Bill and Melinda Gates. 

We need:

*tools for the development of national or regional e-health initiatives and strategy. 

*need to collaborate with developing these national, regional, and international initiatives so that we all can share some information and look at some technology together and work with these organizations to build that capacity. 

*cooperation and information exchange among all the members. 

Gamification -game thinking and game mechanics in a non-game context in order to engage users and solve problems. 

gamification is almost unanimously associated with the digital revolution, this is not necessarily so. 

Health Games Research was a  $8.25 million program of the national Wood Johnson's Foundation's Pioneer Portfolio. 

It awarded grants to different researchers that were working to improve the quality of interactive health games and increase the impact of health games on players health behaviors and outcomes. 

started in 2009 and ended in 2013

seeking out to get better patient engagement in some of the patient's health conditions.

Second Life -virtual online world developed by the Linden Lab launched in 2003

by 2013, it had about a million regular users. 

similar to a massively player online role playing game. 

Linden Lab emphatically states that their creation is not a game because there is no manufactured conflict or set objective.

Second Life is this world where you develop an avatar and your avatar can have a variety of characteristics. You can also there's a whole culture where you can have money and you can buy different clothing and go to different clubs. 

different organizations had "islands" -developed by programmers at those organizations.

IBM- meet w some of their employees who work from home in their conference rooms

Many universities had an island:

*Vassar College

***did a replication of the Sistine Chapel, which was beautiful

Im Second Life- avatar can fly so you could fly up around the artwork and actually see it up close and detailed.

Other universities established nursing simulation labs in which you could go in there and actually have a simulation lab. And those were really quite successful. 

Second Life- most  universities have taken down their islands. *it's not used as much

*its primarily a more of a cultural and social gathering for people.

*different organizations that have islands

*many social things you can do. 

*can fly and you can walk around, good for paraplegics or quadriplegics 

***gives a sensation of being able to mobilize when they can't. 

Games: 

Build a Healthy Plate by the American Diabetes Association. 

*select the right foods if you have diabetes. 

*great for kids and helps them learn about which foods are better than others.

Diabetic Dog Game

*funded by the Robert Wood Johnson Foundation initially. 

*a little dog has diabetes

*have to feed him the right foods, give him his medicine, make sure he drinks water. 

*help people understand their disease by making the better choices.

 Nanobot's Revenge

*targeted to children and teenagers

*kids with cancer can actually shoot and kill little cancer cells. *helpful for kids to get their frustrations out about their disease.

New:

Volunteer Science *collaboration by several colleges:

Northeastern Illinois 

*and Northwestern

*trying to develop games that collect data so that they can have research data. 

*turning to games to collect different data. 

*Some games are survey  driven

Heroquest 

*collect research about dementia.

*first signs of dementia is lose ability to do way finding. 

*collecting massive amounts of data about way finding, which is really fascinating.

*longer you play, the more data points you're giving them and *hopefully will be able to advance the research in the dementia field. 

gamification to help live better:

Mango Health 

*collects information about your diet, your activity. 

*timer or a reminder to take medication

QuitSTART

*geared towards teenagers to stop smoking

Run, Zombies Run

*app

*gamifies running

*listen to music then it will tell you that zombies are after and you try to run faster so that you can get away from the zombies

Wearables:

Thync. 

*transcranial direct stimulation *$300. 

*help  be calm. 

*can rev you up

*worn on head.

Virtual reality goggles 

*give an experience of calming or different information. 

smart goggles

*for skiing or boarding

*map on screen.

*tells you how fast you're going

*statistics 

Tech Tats

*paint that tattoo on skin to monitor temperature

wearables:

Fitbit

Kakoon EEG 

*similar to Thync device

*calm brainwaves down so that you can relax and de-stress

Dash

*in-ear Bluetooth earbuds that  plays music & monitors  temperature and variety of other things 

*data that can be used to help care for patients.

difference between:

*electronic medical records versus 

*electronic health records

electronic medical record:

*all-inclusive record that is institution-specific. 

*doesn't interact with outside systems

*provider-controlled within the organization

Electronic health record:

*aka lifetime patient record

*includes data from all specialties

*patients can interact with the system

what is in an electronic health record:

*Computerized provider order entry

*electronic medication administration record

*barcode medication administration

*clinical documentation

computerized provider order entry (CPOE):

*allows providers and clinicians to enter orders via the computer

*could be used for:

***medications

***laboratory/diagnostic tests ***consultations

*interfaces with other EHR 

components to process orders

*allow orders to be entered, tracked, processed, updated, and completed

Electronic medical administration records (EMR):

*the medium used to view and document medication use. 

*Orders are entered using CPOE and verified by the pharmacy

*EMAR includes:

***drug name

***administration time

***dose

*can be displayed in a variety of ways

*can be filtered any way the person who is giving the medication would like to see it

*works in conjunction with barcode medication administration, which also is best combined with CPOE in a pharmacy system

*designed to prevent errors during medication administration

*involves using a scanner that scans the nurse, the patient, and the medication, and it verifies the five rights

(some nurses will not scan in order to cut time, but there are scanning reports that are used in organizations that have a higher rate of scanning, such as 90 and above, will have fewer medication errors)

Clinical documentation: 

*essential part of EHRs

*records, manages, and reports patient care activities through the EHR

*should support clinician workflow

 *provides functionality for plans of care, decision support, viewing trending data

Specialty applications: 

*aka niche systems

*another type of EHR

*goes in conjunction with the EHR

*systems designed for specific departments or groups of users

*may be stand-alone, integrated, or interfaced with EHRs. 

*best interfaced with EHRs. *These can include things like: ***perioperative or surgical services systems

***maternity care

***neonatal intensive care

***emergency departments.

Ancillary systems- software programs used to support specific departments

examples:

*laboratory information system

*radiology information system, *pharmacy system

(they address specific needs of a department)

The benefits of EHRs are 

*cost

*access

*quality

*safety

*efficiency of care delivery. *increase productivity

*enhance effectiveness

*provide centralized access to patient information

*improve clinical documentation

*provide resources for patient education

*provide for better reporting.

*From a state and national perspective:

***improves the coordination of care and reduces medical errors

***provides a national data set for public health and research, ***working towards that interoperability

***improves the overall health care for citizens.

Future directions of EHRs:

*personalized medicine, *customized medications

*expansion of a national EHR. 

*share health information on a global level.

Dr. Robert Wachter -The Digital Doctor. 

Wrote in his book about an error that happened that caused him to think about EHRs.

Error: 

*16-year-old boy

*weighed 38.6 kilograms 

*came in with chronic immunodeficiency disease, *admitted for colonoscopy as a workup for GI bleed.

*patient was on multiple home medications as a result of his chronic disease, including Septra Double Strength 160 mg BID, twice a day.

*At 1:09 PM, admission orders for 38.5 Septra DS tablets was written. 9 hours later, he took this dose. 14 hours after that, the patient had a seizure and a code blue was called. 

*He was sent to the ICU and was there for a week (patient turned out fine)

EHR role in this errror: 

*resident intended to order one Septra DS BID

*hospital EHR, Epic, was set up so that if patient weighs < 40 kg, a weight-based dose must be used (dose can't be one Septra tablet, it had to be based on mg/kg.)

*appropriate dose was 5mg/kg 

*resident wrote order for 193 mg (5 milligrams x 38.5 kg = 193 mg)

*One tablet is 160, so it makes sense, you give him one tablet. 

*However, EHR was set up so that if a dose is rounded and it's greater than 5% of the calculated dose, it must be confirmed and signed by the ordering physician. The order that the resident had ordered had a 17% difference. 

*Resident accidentally changed the order to 160 next to the mg per kg field, resulting in 38.5 tablets. 

*An alert was triggered but the resident said she gets those alerts all the time, and she didn't even look at it and overrode it

*This is an example of alert fatigue. 

*The pharmacist received the alert too, saying, "Wow, that's a big overdose", and overrode the whole thing as well.

*After the resident and pharmacists overrode the alerts, it went to the pharmacy robot which brought the order to the nurse.

*The nurse that took the order was a first year nurse who happened to be floating to a research floor. 

*The nurse thought it sounded like a really unusually large dose and considered asking the charge nurse, but the charge nurse was busy giving chemo, so she didn't want to bother her.

*The patient's mother told the patient he would get some different medications, so the patient didn't think anything of it. 

*The bar codes were scanned and the order was confirmed, so the patient ended up taking all of those pills.

*A system to help people discern different alerts and what are more important than others can help with alarm fatigue to avoid situations like these from happening. 

 

Health Insurance Portability and Accountability Act:

*the driving force for informatics dealing with clinical data

*The compliance deadline was set fully for 2006

*provides privacy and security measures in health care

*mandates to de-indentify data by removing 18 identifiers:

***date of birth

***address

***phone numbers

***identification

American Recovery and Reinvestment Act:

*added more rules

High Tech Act: strengthened rules

*National Provider Identifier- occurred in 2009

HIPAA rules:

*have safeguards in place to ensure data is not compromised and that it is only used for the intended purposes. 

*should not impede the treatment of patients

*It covers health plans, which are health insurers, health care providers, health care clearinghouses. 

*Not required and not covered in this act:

***insurance companies

***employers

***schools

***school districts

=have their own privacy law called FERPA

*many law enforcement agencies not covered by HIPPA

Security:

three A's: 

*authentication

*authorization

+accountability

breaches:

Health care data can be worth $25 to $250 on the black market. 

*It's more valuable than credit card data. 

*Social Security numbers can be used for identity theft

*health care information can be used for submitting false claims, buying expensive medical equipment, such as oxygen, and selling on the black market, and getting health care under someone's else's identity.

*security methods that help prevent this:
checking driver's license when at health care visit or taking picture of patient 

*many organizations are starting to take pictures and put it with your health record so that when patient comes in they can identify theyre the person  they're caring for. 

Breach in Anthem:

* 2015

*found internally a few years ago, and contained information like Social Security, financial data, lots of different information. 

*Most companies have cyber insurance to help, have to hire separate public relations firms specializing in breaches in order to help them through the public relations disaster that it might cause.

*80 million records for current and former customers and employees, including their names, birthdays, Social Security numbers, street addresses, email addresses, and employment information were included, including income data.

*breaches are a serious issue today in informatics.

********

Patient engagement:

*combines patients' knowledge, skills, ability, and willingness to manage their own care.

patient engagement methods:
*patient portals
*OpenNotes. 

patient portals:

*important tools. 

*help patients understand why tests are being ordered or what's going on in their care, which can motivate patients to become more involved.

*great way of communication about health

*shows lab results and testing that needs to be done for communicating, when the next test needs to happen, where the follow-up needs to be, and if tests are normal or abnormal

*convenient because getting to follow-up visit can be a barrier. 

*secure messaging through the patient portal

*patient has to be enrolled in the patient portal.

Future features of portals:

*ways for patients to do self-triage, software that patient puts in their symptoms and it guides them through a pathway. helps determine if problem is urgent an need to go to emergency department or whether they can wait to call their physician. 

*helpful to keep people out of the emergency department when its not necessary

other benefits to patient portals:

*motivating tool for patients.

*patients have the ability to look at their health summaries on their own time and their own space 

*helps patients take more ownership of their conditions such as diabetes control, because they see what their A1C has done over a period of time. 

*patient Empowerment

*visualization for patients

OpenNotes

*international movement that allows patients to see what the provider is putting into their medical record. *international movement that is now becoming more widespread

*substance abuse or violence within a home setting.

*benefit of transparency and trust

*patient can look at every note provider writes 

*health care is moving to collaborative engagement and recognizing the patient as a partner in health

*when someone's writing something about you, especially personal health information, emotional information, psychiatric, patient has the right to see that.

*seeing provider write down exactly what was discussed can be objective, doesn't have to be soft on the details and can be very real, (this is what we're dealing with, this is our plan, this is where we're starting from)

*practitioners should be writing good, solid, objective notes that you would want to share with the patient.

*term that describes effort to help people understand  significance of data by placing it in a visual context. 

*Patterns, trends, and correlations that go undetected in text-based data can be exposed and recognized. 

*It is storytelling with data.

key questions to consider when doing data visualization:

*What story is data trying to tell? 

*What type of data do you want to explain? 

*What chart type will display  data in the most efficient way? *Who is the audience? 

exploratory versus explanatory analysis:

exploratory analysis-

*what is needed to understand the data. 

*preliminary look at data to  figure out what it's trying to say

explanatory -

specific thing you want to explain, a specific story you'd like to tell.

after analysis in the exploratory phase, figure out if data answers the question

ultimate goal:

If you're trying to change health policy or practice in any way, that's where explanatory comes into play.

audience: 

*important to know who you're communicating to. 

*need to know who's going to be in the room

*who the stakeholders are, *what do you want them to know? 

*What do you want them to do? 

*What's the endpoint that you're trying to get to? 

*how can you use the data to get your endpoint?

*know who stakeholders are and how they're related to your project. 

*Some people in audience are the decision-makers

*Some people in audience are there to support. 

*may want to narrow who you're inviting. 

relationship:

*what kind of relationship do you have with the audience? *How are they going to perceive you? 

*Do you need to build credibility? 

*need to also come across as being the expert (looked at this data very intimately and know a lot about it)

Nancy Duarte

*has a company that is in the business of developing presentations of organizations

*made a model for different sections of the presentation process:

1*conceive the idea

2* visualize the idea

3*present the idea.

*question your data

***check data and make sure there's verification.

***There are sometimes errors in data entry and typos that were not caught in published data sets. 

*clean the data

***make sure data in  database is consistent. 

***ensure like terms if comparing two data sets

***pay attention to time frames (if have two things that were collected at different times, it might make a difference in  data analysis and visualization)

tools for visualization:

Microsoft Excel

Google Spreadsheets

Tableau

programming language (such as R) 

types of charts:

*vertical bar chart

*waterfall chart- shows pattern

*horizontal bar chart

*area chart

*spider charts - helpful to see peak and ebb and flow patterns. 

Choose the one that displays the information better and makes your point. 

*using color is a technique to show patterns 

*once you have looked for patterns and relationships, think about what conclusions you can draw from data

audience is  relying on you, as the expert, to come up with  these conclusions. 

*allocate enough time to become an expert

*don't go down too many rabbit holes.

*****

Infographics

*a visual image (such as a charter diagram) to represent information or data. 

"A good infographic is worth a thousand words. "

*fun and a quick way to learn about a topic without the tone of heavy reading. 

*snippets of information

*usually visually pleasing.

set up data and organize it, and then figure out how to put it pictorially in this infographic. 

*easy to read

*information gets presented in a very pleasing way.

 tips for infographics:

*Choose an interesting title, *Include a diversity of resources and statistics. *Promote via social media websites and make it easy to share and embed the infographic. 

*make it easy to share with people so they can forward it or like it. 

*Make it easy for readers to engage

*avoid white background

*don't use too much text. 

*if on social media, pay attention to how many hits it is getting.

Infographics are wildly popular now. 

Pinterest has many infographics

huge marketing tool

also good in health care to get health information out there in a really easy and fun way. 

important to put references at the bottom so people can search out more information.

American Public Health Association, APHA, has  a variety of infographics. 

World Health Organization uses infographics for many of their messages on public health. 

Explanatory data helps  crystallize the target data that you discover during the exploratory analysis. 

Keep the message clean and to the point, provide what you found, and not your entire data analysis.

more tips on graphs and charts:

*remove clutter

*clean up the axis labels by labeling data directly and leveraging a consistent color. 

*gather the graphs or charts you want in the infographic. *keep focused on the message. *consider using PowerPoint. (can make one big slide with all the information by changing the slide size)

*insert material: think of each item as a different graphic that you want to put in your infographic. 

Legal and Ethical Isssues

Legal and regulatory matters when it comes to health informatics are no different than legal and regulatory matters in other fields or other areas. 

There is a difference between law and ethics. 

Ethical and legal issues often overlap.

Ethical considerations:

*attempts to determine what is good/meritorious and which behaviors are desirable/correct in accordance with higher principles. 

Legal principles -derived from ethical ones but deal with the practical regulation of morality and behaviors and activities. 

Laws- directly tell people how to behave under specific circumstances and prescribe remedies or punishments for individuals who do not comply with the law.

Examples of basic ethical principles that are universal:

*principle of autonomy:

all persons have the fundamental right to self-determination

(In regards to informatics, we need to preserve this right to self-determination. )

Principles of equality and justice:

*all persons are equal as persons and have a right to be treated accordingly. 

Principle of beneficence: all persons have a duty to advance the good of others where the nature of this good is in keeping with the fundamental and ethically defensible values of the affected party. 

(we all have to act in the way where it's beneficial to another person. We can't act in a way where someone might get hurt, knowingly get hurt, or purposely get hurt. )

The principle of non-malfeasance:

all persons have a duty to prevent harm to the other person insofar as it lies within the power to do so without hard to themselves.

The principle of impossibility:

all rights and duties hold subject to the condition that it's possible to meet them under circumstances that are obtained

Principld of integrity: whoever has an obligation has a duty to fill that absolute obligation to the best of her or his ability. 

(making sure you do the right thing, even when no one's looking. And it's very, very important to be able to trust in people to do this.)

General principles of informatics ethics:

-(come from the International Medical Informatics Association)

*principle of information privacy and disposition:

All persons have a fundamental right to privacy and control over the collection, storage, access, use communication, manipulation, and disposition of data about themselves. 

(have laws like HIPAA)

*principle of openness:

The collection, storage, access, use, communication, manipulation, disposition of personal data must be disclosed in an appropriate and timely fashion to the subject of these data. 

*Principle of security:

data that has been legitimately collected about a person should be protected by all reasonable and appropriate measures against loss, degradation, unauthorized discussion, access, use, modification, or communication. 

*Principle of access:

the subject of the electronic record has a right of access to that record and the right to correct the record with respect to accurateness, completeness, and relevance. (So patients do have the right to look at their records. They can make addendums to that record if there are incorrect information.)

*The principle of legitimate infringement:

the fundamental right of control over the collection, storage, access, use, manipulation, communication, and disposition of personal data is conditioned only by legitimate and appropriate and relevant data needs of a free and responsible democratic society and by the equal and competing rights of other persons.

*****

Consumer genetic testing is now available with companies, such as 23andMe. 

For around $200, you can be tested for genetic health risks, ancestry, wellness, carrier status and traits, and predisposition to some illnesses. 

*where you're from, where your ancestors are from, physical traits, the expression of the, how likely it is that it's expressed. 

it introduces the general population into the field of genetics

Helpful especially if you don't know your family history at all (i.e.: somebody adopted)

Helps know about several chronic health conditions that may run in their family and  whether or not they're at a higher risk for those conditions 

downsides to knowing genetic makeup:

*information is highly complex and sophisticated. 

*to have a report that's handed with no explanation, no context, fails the consumer. 

*one dimensional piece of information that could be extremely confusing or misleading and really not offer  much health information. 

*could really be scary too.

*without the context of a genetic counselor really working through your family history and your health history, is just 1% of the picture. 

*communication about what those findings mean is very important. 

 *****

23andMe and impacts of genetic testing:

How to approach a patient coming  with some results from some of the genetic testing:

*Discuss predisposition for certain conditions and screen for it 

*But beyond that, you'd really have to involve a broader team.

23andMe sells the de-identified information to researchers:

*data go into sort of the big data pool to try to find answers to some questions about certain diseases

*having more and more samples is very powerful when you're collecting data.