Patient Engagement Toolkit by EATRIS E&T https://padlet.com/EATRIS_training/9gd0gab25qtbgl25 en-us 2022-07-01 08:59:12 UTC 2022-07-05 10:34:26 UTC hello@padlet.com What has been done by us for this task so far EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2234998852
  • survey to researchers
  • task force formed
  • Patient Engagement Open Forum consultation
  • 3 focus group meetings: funders, patients, researchers
    • ]]>     2022-07-01 09:03:42 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2234998852     Main barriers to PE EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2234999126
  • Research culture
  • Added value of PE
  • Time and human resources
  • Communication and trust
  • Connecting resources
    • ]]>     2022-07-01 09:04:15 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2234999126     Challenges cited by Researchers EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2234999293
  • unclear what PE means
  • how to engage patients
  • how to communicate
  • how to find right patient/ PO
    • ]]>     2022-07-01 09:04:40 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2234999293     Added value cited by Researchers EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236415605
  • discussions w patients provide a different perspective
  • important for study design
  • in clinical trials patients and researchers can have different views on end points
    • ]]>     2022-07-04 11:30:27 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236415605     TOOLKIT EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236417009 OUR STRENGTH -->
    Bringing all the existing materials together so it's:
    • ACCESSIBLE 
    • USER FRIENDLY
    • VISUALLY CONVINCING
    • EASILY SHAREABLE
    ]]>     2022-07-04 11:33:35 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236417009     Link existing resources EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236417316
  • Some can be used as is
  • Some need to be adapted
    • ]]>     2022-07-04 11:34:07 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236417316     Key outcomes of the Toolbox should be EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236419514
  • We want to see a cultural shift in research environment
  • Disseminatinng already existing materials further
  • Raise awareness of Patient Engagement
  • improve communication 
  • support through the process for the researchers
    • ]]>     2022-07-04 11:38:02 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236419514     Create new materials EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236425056 Develop new proprietary text]]> 2022-07-04 11:47:47 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236425056 Adapted resources EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236425615 2022-07-04 11:48:49 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236425615 Technical setup EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236427758 https://biomarker.nu/bic-guide ]]> 2022-07-04 11:53:09 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236427758 Flowchart EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236427863 2022-07-04 11:53:23 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236427863 Roadmap or a journey EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236428305 Why engage patients in the first place?
    FOCUS: Pre-Clinical
    Highlight: Quality of Life
    Stages of research]]>     2022-07-04 11:54:22 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236428305     Interactive educational scenarios EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236430386 2022-07-04 11:58:29 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236430386 Part of the website vs downloadable doc EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236434730
  • pop up windows, explanation bubbles
  • downloadable fact sheets (PDFs) and fillable forms (Word)
    • ]]>     2022-07-04 12:07:16 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236434730     Paradigm guide & setup EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236438131
  • RATIONALE
  • METHOD
  • RESOURCES
    • ]]>     2022-07-04 12:14:00 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236438131     Difference between involvement, engagement and participation EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236456169 This can be integrated into the "WHY"
    Parkinson's resources]]>     2022-07-04 12:43:59 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236456169     Levels of entry/comms EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236457777 Easy entry & sharable
    Deep Dive & Templates

    ]]>     2022-07-04 12:47:15 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236457777     PFMD EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236493173 early development
    Quality Guidance]]>     2022-07-04 13:41:25 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236493173     EUPATI Open classroom, Toolbox & Matchmaking platform (EUPATI Connect) EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236494492 2022-07-04 13:43:38 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236494492 EJPRD PE Guide? EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236501841 2022-07-04 13:53:03 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236501841 Q&A section EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236510033 2022-07-04 14:04:15 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236510033 Patients initiating research EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236511129 https://mpssociety.org/research-grants/]]> 2022-07-04 14:05:42 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236511129 Case studies EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236511998 IMPORTANCE OF PREVIOUS EXPERIENCE]]> 2022-07-04 14:06:59 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236511998 Testimonials and Lessons learned EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236515275 By researchers and patients
    Reach out to people from Synapse: Lessons learned. Maybe we can get them to do video testimonials]]>     2022-07-04 14:11:19 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236515275     Companies and agencies working in matchmaking EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236516169 Merakoi

    ]]>     2022-07-04 14:12:43 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236516169     Checklists EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236529798 2022-07-04 14:31:19 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236529798 Glossary EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236530662 2022-07-04 14:32:38 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236530662 How to's EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236531824
  • present PE cases to funders in the funding application
  • Competency profiles - Paradigm
    • ]]>     2022-07-04 14:34:34 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236531824     Fact sheets EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236537276 2022-07-04 14:43:32 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2236537276 Target groups EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2237076985
  • Researchers 
  • Funders (how they could incentivise PE further than 3-4 lines in the call)
  • Research Institutions
    • ]]>     2022-07-05 07:32:51 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2237076985     Discussion platform EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2237078746 For researchers and patients to connect
    based on disease and treatment]]>     2022-07-05 07:35:11 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2237078746     Top 10 recommendations for Funders EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2237104001 2022-07-05 08:19:08 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2237104001 Dissemination and Communication EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2237144174 SEO optimisation - that's why the blurbs are good
    Keywords for the website

    C&D strategy
    • wider outreach exercise with funders & POs
    • promotion, awareness raising
    • platform, UX
    • try to get speaking slots/ posters/ panels at conferences where researchers are going - identify for 2023
      • incorporate it into the E+ poster as well
      • publication - assign a DOI to the poster too
    • incorporate it into EATRIS trainings and EUPATI Fundamentals Training
    • online learning unit on PE to also advertise the toolkit
    • we should also create an impact measurement/ feedback collection framework
    • maybe organise quarterly events (PEOF) 
    • Reach out to National and European Societies (mailing lists active) incl EUHA
    • Foster PE being added before sci topic into talks - this should be a patient or a nurse talking about this to the researchers who are working on this
    ]]>     2022-07-05 09:26:32 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2237144174     Recommendations for Funders EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2237170111 PEOF Consultation to gather data from Patients on how their experience has been participating in EU funded project PE activities/boards/groups --> this arms us with data to develop guidelines to funders based on evidence ]]> 2022-07-05 10:16:33 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2237170111 Patient Included trade mark EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2237172528 2022-07-05 10:21:59 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2237172528 Pub Med & Google Scholar - filters "patient" EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2237172906 2022-07-05 10:22:40 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2237172906 Patient Co-authorship & review for sci papers EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2237173753 2022-07-05 10:24:28 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2237173753 Media kit EATRIS_training https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2237177932 Pre-made materials for others to use]]> 2022-07-05 10:33:49 UTC https://padlet.com/EATRIS_training/9gd0gab25qtbgl25/wish/2237177932