The survey results from IPPOSI members provide feedback on the proposed 2021-2024 strategy. Key areas of focus included revising the vision to emphasize patient involvement in research and innovation. The mission was updated to focus on patient voices and involvement in decision-making. Members agreed with proposed priority areas of access to innovations, patient involvement, and understanding patient data. They ranked education and involvement actions as most important. The results will help IPPOSI refine its strategy to better represent members' priorities.

1. PATIENTS – SCIENCE – INDUSTRY
2020
Results of membership survey –
IPPOSI Strategy 2021-2024

2. • Open from Oct. 13, 2020 – Oct. 25, 2020
• Total Responses: 64
Results of online Survey: IPPOSI strategy for 2021-2024
• 18% identified as Non-Members

3. Different organisations
/ members
Selection inserted into
wordcloud:

4. Draft Strategy
used for
consultation

5. Approach to survey
• Focus on Vision, Mission, Priority Areas, Pillars, Actions
• IPPOSI ‘Values’ & ‘Foundation’ not included
• ‘Member Surveys’ made available ‘to the public’
• Non-member responses analysed to ascertain if responses as a whole
differ from IPPOSI members
• Ranking of proposed actions determined to be an easier way of gauging /
interpreting member’s views

6. Q1: Vision:
The patient voice is at the
centre of all health care and
health policy planning &
decision making.
Is this vision relevant for
IPPOSI?
Answered: 62 Skipped: 0

7. Examples of comments on Vision
• Patient partnership is central to healthcare planning, policy, implementation and review
• I discovered IPPOSI by accident. You need to work on your visibility to patients. I've never been told
about you by a medic or another patient etc.
• The vision should also reflect the importance of the patient voice being part of the development of
evidence e.g. research.
• We are evolving from traditional "doctor knows best" mentality
• Be brave - the vision should be one sentence. Patient-led research to drive cures in chronic diseases in
Ireland

8. Proposed Changes to Vision
From:
The patient voice is at the centre of all health care
and health policy planning & decision making.
To:
The patient voice is at the centre of all health policy,
care, research and innovation in Ireland.

9. Q2: Mission: We are the collected and effective voice of patients, science and industry
• Our mission is to inspire and enable patient understanding and involvement in the treatment and decision-
making processes that affect their healthcare in Ireland.
• We believe patients and patients’ organisations have a right to be involved in healthcare policymaking and we
advocate for their inclusion in decision-making processes.
• We envision a future where patients will access the best available treatments, care practices and health
technologies when they need it and where they need it
Does our Mission (above) reflect our purpose?

10. Comments on Mission
• The first sentence could cause confusion. Not sure how to be an effective voice for all three or even if IPPOSI should be a voice
for science and industry. It looks like the voice of those three have equal standing in that first sentence when perhaps the
patient voice needs weighting
• I don't see the "voice" of science or industry. We should ALL being collaborating together.
• Remove the word effective. You are pretty effective already...
• Omit "our mission is to" and say We inspire. Omit "We believe" and just start with Patients. omit "we envison a future where”
• Have you considered 'collective' rather than 'collected’?
• As before, the development of evidence is a key element of decision making and policy and should be reflected here.
• I think that we should also be looking not just for better treatment but better screening, early diagnosis and prevention and
personalised care that is only possible if there is better investment by the healthcare system in genomic medicine/innovation
• The mission statement is clear and concise but is 'envision' too aspirational? Would a stronger more definitive word be more
appropriate? As patients we want a future where these explicit needs are met.
• I would like to see reference to equity in the Mission Statement for example 'We envision a future where ALL patients will access
the best available.......

11. Proposed Changes to Mission
From:
We are the collected and effective voice of patients, science and industry
• Our mission is to inspire and enable patient understanding and involvement in the treatment and decision-making processes
that affect their healthcare in Ireland.
• We believe patients and patients’ organisations have a right to be involved in healthcare policymaking and we advocate for
their inclusion in decision-making processes.
• We envision a future where patients will access the best available treatments, care practices and health technologies when
they need it and where they need it
To:
We are the collective voice of patients, science and industry in Ireland.
• We inspire and promote patient involvement in the treatment and decision-making processes that
affect healthcare in Ireland.
• Patients and patients’ organisations have a right to be involved in healthcare policymaking and we
advocate for their inclusion in decision-making processes.
• We work towards a future where all patients in Ireland will access the best available treatments, care
practices and health technologies when they need it and where they need it.

12. Q3: Our Priority Areas:
The IPPOSI Board & Staff has agreed
three priority areas for the period up
to the end of 2024.
- Access to Health Innovations
- Patient & Public Involvement
- Patient Data
Do these priority areas reflect what
you wish IPPOSI to focus on?
Answered: 62 Skipped: 0

13. Comments on Priority Areas
• Feel interpretation of Pharma regulations need to updated &
reviewed to allow easier patient & advocate involvement
with industry - the vision is fine but advocates need to be
recognised so can be attendees at medical & industry events
at and to ease burden of compliance etc
• Vaccines...
• Access to basic care should be first. Equity in access. This is
currently not the case. Patients with the ability to pay have
timely access to care.
• Equitable Access to Health Innovations
• Improve trust between patient, science and industry

14. Proposed Changes to Priority Areas
From:
- Access to Health Innovations
- Patient & Public Involvement
- Patient Data
To:
- Access to Health Innovations
- Patient & Public Involvement
- Understanding Patient Data

15. Q4: Our Pillars:
The IPPOSI Board & Staff has agreed three
organisational pillars for the period up to the end of
2024.
Our future IPPOSI-owned (& IPPOSI-partnered)
Activities will be actioned and prioritised under
these three pillars:·
Educate
Involve
Inspire
Do these pillars reflect your view of the types of
actions that IPPOSI should be doing?
Answered: 62 Skipped: 0

16. Comments on Pillars
• Inspiring who exactly?
• Need to Disrupt, Disintermediate
• Involve should be first.
• Support particularly for those in the rare disease community who have individual
needs and dont have the opportunity to get involved.. Some feel very isolated.
• I am wondering if instead of just involve we use the word empower. There needs
to be involvement but not just involvement for sake of it, patient needs to be
empowered to help make decisons.
• Not sure about inspire!
• Inspire who exactly? Other patients, advocacy groups, science or industry or all of
the above? Inspire innovation, policy and/or process development or people?
Education and involvement are central to the new strategy but inspire needs
clarity. If we have to clarify any of the pillars, then the driving principle is lost.

17. Proposed Changes to Pillars
From:
- Educate
- Involve
- Inspire
To:
- Involve
- Educate
- Impact

18. Q5: MAJOR ACTIONS for IPPOSI to deliver on between 2021 & 2024. Please rank the actions from 1 to
9 in the order you believe are most relevant. (1 = most relevant to you, 9 = least relevant to you)
Answered: 43 Skipped: 19

19. MAJOR ACTIONS: Member’s survey ranking
TOP 5:
1. Educate: Develop a series of PPI Training for Health Stakeholders
2. Inspire: Create a series of patient-led narratives (Editorials, Opinion pieces, Webinars etc.)
3. Involve: Develop a patient capacity building / mentoring programme
4. Educate: Deliver two editions of the multi-module Patient Education Programme
5. Educate: Develop an online education portal/toolbox for Irish patients / health interested
public, leveraging EUPATI & other tools.
BOTTOM 4:
• Inspire: Grow IPPOSI’s international engagement
• Involve: Design & Deliver 2-3 Citizen juries on ‘tricky health topics’
• Involve: Explore the diversity of patient perspectives in IPPOSI priority areas
• Inspire: Develop and run 3 Major IPPOSI Campaigns (one for each priority area)

20. Q6: MEDIUM-SIZED ACTIONS for IPPOSI to deliver on between 2021 & 2024
Answered: 43 Skipped: 19

21. TOP 4:
1. Involve: Strategically partner with state agencies to implement IPPOSI priorities (e.g. Slaintecare)
2. Involve: Work with academic and health professional networks to build capacity in PPI
3. Involve: Strengthen engagement with all IPPOSI members, in particular our 100+ patient groups
4. Educate: Promote patient education to a broader audience, targeting seldom-heard / under-
represented communities.
BOTTOM 4:
• Educate: Develop an accreditation for Patient Education to attribute credits to a broader piece of
learning/study.
• Educate: Develop content in new topics for delivery as e-learning modules / sessions (e.g. vaccines,
digital health)
• Inspire: Work with HRCI and RDI to promote awareness of Rare Diseases
• Inspire: Deliver a series of online (e.g. podcasts) outputs in inspiring areas of patient-led innovation
MEDIUM-SIZED ACTIONS: Member’s survey ranking

22. Q7: ARE THERE OTHER MAJOR OR MEDIUM-SIZED ACTIONS THAT YOU BELIEVE
IPPOSI SHOULD BE DOING OR AREAS WE CAN BE MAKING AN IMPACT IN?
• CAR-T
• Offer dedicated training for patient groups in relation to HTA submission
• Updated guide to patient group - industry relationship and a all stakeholder discussion to
address recognition of patient advocates as a seperate category to patients in terms of
regulation
• independent PPI in industry. Would industry partners accept independent PPI input?
• Vaccines awareness and development
• Opportunities are created for patient representatives but what happens next?
• more visibility in mainstream media - news papers, TV
• more visibility of collaboration across EU on common topics, power in a larger voice and
shared resource? These projects are probably ongoing but not as visible to all IPPOSI
members
• linking with DOH on policy formulation to include patient and family voice

23. Q8: WHICH HEALTH STAKEHOLDERS DO YOU BELIEVE WOULD BE MOST RELEVANT FOR IPPOSI TO
TRAIN ON PATIENT/PUBLIC INVOLVEMENT?
• Answered: 43 Skipped: 19
COMMENTS UNDER ‘OTHER’
• Rare Disease groups, not for profits and
foundations
• I think Pharma are implementing their own
training. There was discussion re having a toolbox
for patients - instead can you just link into existing
toolboxes on your site like PFMD and EUPATI?

24. Q9: WHICH 'SELDOM HEARD' GROUPS DO YOU THINK IPPOSI SHOULD BE ENGAGING
TARGETING?
• Answered: 43 Skipped: 19
COMMENTS UNDER ‘OTHER’
• Health issues specific to women
• Persons with rare diseases
• The elderly. Advocacy is generally considered for 'end-
of'life' issues but as our population ages, continued
wellness into longevity is important. Many aspects of
elderly advocacy mirrors the needs of all groups above
but in a concise and considered way. The elderly voice
quietly screams and is often left unheard.

25. Overall trends
• 64 responses (81% members) from over 30 member orgs represents a representative return from the survey
• No major differences with resect to member/non-member responses.
• Survey reveals broadly supportive views of new strategy with ‘tweaks’ to vision, mission, priority areas
• Broad member support for ‘Educate’ and ‘Involve’ pillars and major/medium-sized actions identified under
each pillar
• ‘Inspire Pillar’ needs clarification and has been re-worded
• For medium-sized actions, Member’s wish to see IPPOSI focus on external partnering & member engagement