# data[].attributes.body
Pre-made materials for others to use

# data[].attributes.headline
Patient Co-authorship & review for sci papers

# data[].attributes.subject
Patient Co-authorship & review for sci papers

# data[].attributes.headline
Pub Med & Google Scholar - filters "patient"

# data[].attributes.subject
Pub Med & Google Scholar - filters "patient"

# data[].attributes.body
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

# data[].attributes.body
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

# data[].attributes.body
For researchers and patients to connect
based on disease and treatment

# data[].attributes.body
Researchers

Funders (how they could incentivise PE further than 3-4 lines in the call)

Research Institutions

# data[].attributes.body
present PE cases to funders in the funding application

Competency profiles - Paradigm

# data[].attributes.headline
Companies and agencies working in matchmaking

# data[].attributes.subject
Companies and agencies working in matchmaking

# data[].attributes.body
Merakoi

# data[].attributes.body
By researchers and patients
Reach out to people from Synapse: Lessons learned. Maybe we can get them to do video testimonials

# data[].attributes.body
IMPORTANCE OF PREVIOUS EXPERIENCE

# data[].attributes.body
https://mpssociety.org/research-grants/

# data[].attributes.headline
EUPATI Open classroom, Toolbox & Matchmaking platform (EUPATI Connect)

# data[].attributes.subject
EUPATI Open classroom, Toolbox & Matchmaking platform (EUPATI Connect)

# data[].attributes.body
early development
Quality Guidance

# data[].attributes.body
Easy entry & sharable
Deep Dive & Templates

# data[].attributes.headline
Difference between involvement, engagement and participation

# data[].attributes.subject
Difference between involvement, engagement and participation

# data[].attributes.body
This can be integrated into the "WHY"
Parkinson's resources

# data[].attributes.body
RATIONALE

METHOD

RESOURCES

# data[].attributes.body
pop up windows, explanation bubbles

downloadable fact sheets (PDFs) and fillable forms (Word)

# data[].attributes.body
Why engage patients in the first place?
FOCUS: Pre-Clinical
Highlight: Quality of Life
Stages of research

# data[].attributes.body
https://biomarker.nu/bic-guide

# data[].attributes.body
Develop new proprietary text

# data[].attributes.body
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

# data[].attributes.body
Some can be used as is

Some need to be adapted

# data[].attributes.body
OUR STRENGTH -->
Bringing all the existing materials together so it's:

ACCESSIBLE

USER FRIENDLY

VISUALLY CONVINCING

EASILY SHAREABLE

# data[].attributes.body
discussions w patients provide a different perspective

important for study design

in clinical trials patients and researchers can have different views on end points

# data[].attributes.body
unclear what PE means

how to engage patients

how to communicate

how to find right patient/ PO

# data[].attributes.body
Research culture

Added value of PE

Time and human resources

Communication and trust

Connecting resources

# data[].attributes.headline
What has been done by us for this task so far

# data[].attributes.subject
What has been done by us for this task so far

# data[].attributes.body
survey to researchers

task force formed

Patient Engagement Open Forum consultation

3 focus group meetings: funders, patients, researchers