University of Limerick - Person Centred Healthcare - Derick Mitchell

1. PATIENTS – SCIENCE – INDUSTRY Dr Derick Mitchell June 24th, 2019 Person-Centered HealthCare, UL
2. Person Centered Care Conference24/6/2019 www.ipposi.ie Evidence-based patient advocacy
3. Person Centered Care Conference24/6/2019 www.ipposi.ie IPPOSI? Who?IPPOSI A patient-led organisation that works with patients, government, industry, & science to put patients at the heart of health innovation
4. Person Centered Care Conference24/6/2019 www.ipposi.ie IPPOSI Priorities 23 Actively advocate for improved + equitable patient access to Health Innovation Promote meaningful patient involvement in Health Research and Policy
5. Person Centered Care Conference24/6/2019 www.ipposi.ie PATIENT ORGANISATIONS SCIENCE INDUSTRY
6. Person Centered Care Conference24/6/2019 www.ipposi.ie Public Private Partnership IPPOSI Board 8 Patient Organisations 6 Scientific Members 6 Industry Members 50:50 Public : Private Public: • Grant from Department of Health • EU- & National-level grants Private: • Industry membership fee • Industry member sponsorships IPPOSI Funding
7. Person Centered Care Conference24/6/2019 www.ipposi.ie Patient-led activities Health Hacks Workshops Consultations Round-tables Working Groups Summer Schools Conferences Clinical Research Integrated Care Patient Data Health Economics Patient Registries Dynamic Consent Data Protection
8. Person Centered Care Conference24/6/2019 www.ipposi.ie Our Resources INFORM ENGAGE EMPOWER
9. Person Centered Care Conference24/6/2019 www.ipposi.ie Patient Engagement / Involvement?
10. Person Centered Care Conference24/6/2019 www.ipposi.ie “You can give it clever names, but patient engagement, co- production or whatever …..is finding time to create safe spaces to have equal, honest conversations about difficult stuff, then making joint decisions and acting on it together” David Gilbert Patient Engagement / Involvement?
11. Person Centered Care Conference24/6/2019 www.ipposi.ie Impact of Early Patient Engagement? •Huang et. Al (2018) •DOI:0.1016/j.cct.2018.01.0 03 •Crocker JC et al. DOI: https://doi.org/10.113 6/bmj.k4738 •Mader et al., (2018) •DOI: •10.1186/s40900-018- 0104-4 •Levitan et al., (2017). •DOI:10.1177/216847 9017716715 •Armstrong et al. (2018). • DOI: 10.1186/s13012- 018-0745-6 Clinical Practice Costs of Protocol Ammend. Trial Recruitment Planning Patient-led Research Prioritisation
12. Person Centered Care Conference24/6/2019 www.ipposi.ie What matters to patients? • We want person-centred, coordinated healthcare • people having control and influence in decisions that affect their health and care • We want people to be partners in • the design of services • research, innovation and improvement • building real world effectiveness data That the patient voice is listened to AND ACTED UPON
13. Person Centered Care Conference24/6/2019 www.ipposi.ie Why educate patients? • Trustworthiness is vital…. • Patient involvement opportunities are increasing • Need informed advocates to contribute meaningfully to design, development and roll-out of health services in Ireland • Equally….create the situation where • patients are the drivers of their own health data, ensuring it is utilised to improve their health • patient experience data moves up the hierarchy of evidence in service design, re-design
14. Person Centered Care Conference24/6/2019 www.ipposi.ie IPPOSI & The European Patients Academy • EUPATI produces Expert Patients on Medicines Research & Development • Provides Training & Education • Disseminates through national platforms The project received support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies. www.eupati.eu
15. Person Centered Care Conference24/6/2019 www.ipposi.ie Roles change as a result of EUPATI course - creating patient leaders Role Before EUPATI After Member of patient organisation, not actively involved 17% 2% Active role in a patient organisation 62% 71% Leadership role in a patient organisation 62% 71% Employee of a patient organisation 25% 23% Volunteer role in a patient organisation 60% 67% Presenting at conferences, workshops etc. 63% 83% Advising a pharmaceutical company 13% 44% Advising a regulatory agency 21% 42% Advising a reimbursement agency 4% 8% EUPATI Fellows are increasingly taking leadership roles and are engaging with pharma, regulators and HTA bodies. Role changes also imply identity shifts.
16. Person Centered Care Conference24/6/2019 www.ipposi.ie IPPOSI Patient Education Programme in Health Innovation 10-month programme Blended Learning – online + workshops 3 x 10-week modules • Clinical Trials • Regulatory Affairs • Health Technology Assessment Current Education Partners UCD, TCD, HPRA, HIQA, NCPE 1 elearning website - www.patientsinvolved.ie By end of 2019: 45 ‘graduates’
17. Person Centered Care Conference24/6/2019 www.ipposi.ie Three 10-week Modules – different approaches MoU WITH UNIVERISTY CLINICAL RESEARCH CENTRE • Created 40 purposely designed online lectures, modifying pre-existing course material. (University IP) • Significant support from CRC administration + School of Medicine IT dept. • Certificate of completion with UCD + IPPOSI logo NATIONAL REGULATOR • Not a recognized Education Body. • Engaged 10+ staff in pre- existing EUPATI content • Generated Irish-specific content. • 1 staff member coordinated efforts • Communications support • Certificate of completion with HPRA + IPPOSI logo MoU WITH UNIVERSITY DEPT. + HTA AGENCIES • Engaged senior TCD + NCPE + HIQA staff in pre-existing EUPATI content • Generated Irish- specific content • Certificate of completion with NCPE + IPPOSI + HIQA logo
18. Person Centered Care Conference24/6/2019 www.ipposi.ie eLearning Platform – www.patientsinvolved.ie
19. Person Centered Care Conference24/6/2019 www.ipposi.ie Student Feedback – most valuable aspect? The empowerment that the course provides cannot be underestimated. At the end of the course I felt that my knowledge of an area that I have worked in for many years has been enriched and I would gladly have accepted even greater detail in the course content. Being introduced to the world of patient advocacy in Ireland and EU and giving me a confidence that this is an area that I can be a part of and make changes. The commitment given by all those preparing the material for the course was much more than I could possibly expect. I felt very privileged at the attention to detail and need to make sure we were getting the best from the course and understanding all the segments. HPRA input gives me the confidence to understand the way the system works in Ireland, I understand their website and feel confident that I can contribute information / use it in the future. The tutors that were made available. To have that quality of expertise available to us was exceptional.
20. Person Centered Care Conference24/6/2019 www.ipposi.ie Expert Patients – applying the knowledge • Patient Representatives • to represent a patient perspective in health innovation processes by interacting with scientific committees, HTA agencies, regulatory bodies, academia, relevant actors. • Patient Communicators • to contribute to raising awareness on patient involvement in health innovation amongst lay patients, hard-to-reach patients and the lay public. • Patient Facilitators/Trainers • to become engaged in training activities supporting the dissemination of the education and information programmes to patient communities, general public
21. Person Centered Care Conference24/6/2019 www.ipposi.ie From ‘educated’ to ‘involved’ • Graduate profiles on IPPOSI website www.ipposi.ie/our-resources/patient-expert- profiles-2 • Availing of pportunities in palliative care, HSE board, EMA advisory, HPRA committees • Generating media articles, patient group advocacy etc. • Internal Working Groups forming about ‘meaningful’ opportunities, fair market value for involvement, and other topics
22. Person Centered Care Conference24/6/2019 www.ipposi.ie Training Professionals on Patient Engagement
23. Person Centered Care Conference24/6/2019 www.ipposi.ie Building a new Irish healthcare + research environment In 2019, Patient Reps are full members of: • HSE Board • Many National Clinical Programmes • Cancer Strategy Implementation • HSE Drugs Committee • Rare Disease Tech Review Committee • Health Innovation Hub Steering Committee • Ehealth Ireland Committee • Health Research Board – PPI reviewers • National Clinical Effectiveness Committee • HSE National Patient Forum
24. Person Centered Care Conference24/6/2019 www.ipposi.ie Frameworks of Engagement / Experience 2008 - National Strategy for Service User Involvement in Health and Social Services (DoHC & HSE) --------------------------------------------------------------------------- 2016 – Values in Action, QID Cultures of Person-centeredness (HSE) 2016 – Mental Health Local Recovery Groups (HSE) 2017/19 - National Patient Experience Survey - Hospitals (HIQA, HSE, DoH) 2017 - National Clinical Effectiveness Committee – PPI Values (DoH, NCEC) 2017/18 - Patient Narrative Project on Person-centered care (CSPD-HSE, IPPOSI) 2018 – HRB-PPI-Ignite projects begin (UL, NUIG, UCD, TCD, DCU)
25. Person Centered Care Conference24/6/2019 www.ipposi.ie 2025 – a vision for PPI in Ireland? To begin this process: • Develop a common understanding • Share learning and ‘know how’ • Support organisations to develop robust PPI infrastructure • Set standards and policies • Embed the principles + inform emerging practice • Assess the impact of PPI in research + care
26. Person Centered Care Conference24/6/2019 www.ipposi.ie
27. Person Centered Care Conference24/6/2019 www.ipposi.ie Definition of Person-Centred Co-ordinated Care in Ireland “Person centred co-ordinated care provides me with access to and continuity in the services I need when and where I need them. It is underpinned by a complete assessment of my life and my world combined with the information and support I need. It respects my choices, building care around me and those involved in my care” Phelan A., Rohde D., Casey M., Fealy G., Felle P., Lloyd H. & O’Kelly G. (2017) Patient Narrative Project for Person-Centred Co-ordinated Care. UCD, IPPOSI & HSE, Dublin.
28. Person Centered Care Conference24/6/2019 www.ipposi.ie Phase 2 • http://www.hse.ie/yourvoicematters
29. Person Centered Care Conference24/6/2019 www.ipposi.ie Patient Experience in Technology Assessment Right treatment, Right time, Right patient at the right location, by the right provider, at the right cost Minimally Disruptive Treatments • Impact on clinical trial design • Impact on clinical guidelines • Impact on clinical practice • Impact on service delivery, coordination V-T Tran et al. (2015) Taxonomy of the burden of treatment: a multi-country web-based qualitative study of patients with chronic conditions BMC Medicine 13:115
30. Person Centered Care Conference24/6/2019 www.ipposi.ie Take home messages • When someone tells you that patients cannot understand or just do not want to know, just look at the data….. • Patients are inherently innovative and willing to work in partnership • relationship is fragile, dynamic, uncomfortable, ambitious, and goal-oriented Growing body of evidence: • Person-centred approaches are important for ensuring the overall quality of care and for improving health and wellbeing outcomes • Activated / empowered / informed patients have better health outcomes
31. Person Centered Care Conference24/6/2019 www.ipposi.ie With thanks to… • Fiona Weir • Abigeal Jackson, CF Registry of Ireland • Jan Geissler, Patvocates • Avril Daly, Retina International • David Haerry, EATG • Matthew May, EUPATI • Nicola Bedlington, EPF • Clare Hudson, HSE
32. Thank you! @IPPOSI www.ipposi.ie dmitchell@ipposi.ie

Notas do Editor

A patient-led platform that provides a structured way of facilitating interaction between patients, government, industry, science and academia to put patients at the heart of policy and medicines development. In pursuit of this we hold workshops, discussion groups, training days and conferences on policy, legislation and regulation around the development of new medicines, products, devices and diagnostics for unmet medical needs.
The perceived wisdom, just a few years ago, was that patient engagement was fraught with risk.
It could, they argued, become too costly and bureaucratic without offering certain benefits in return.

Now, instead of contemplating the risk of doing patient engagement, growing numbers of decision-makers are speaking of the risks of not doing patient engagement.

Behavioral science, patient engagement capacity, and real-world evidence support the evolution towards a new model that integrates patient engagement at all levels.

Regulators are building expectations of patient input and how to generate it, so much so that we are approaching a tipping point where co-creation with patients is on the verge of becoming the default option throughout the system.

Momentum is behind the patient engagement community and we are now getting into the nuts and bolts of making PE work. Whether it’s the WECAN initiative on reasonable legal agreements between patient advocates and drug companies; forthcoming initiatives to determine the Fair Market Value of patient input; the EU-backed PARADIGM partnership; or the patient-centric focus of The Economist Intelligence Unit’s new report on the future of drug development, it is clear that PE is becoming internalised by the medicines development system.
Reliance on mortality rates and clinical indicators gives only a partial view of the value of health care.

What people really care about is its impact on their wellbeing and their ability to play an active role in society, so that’s what we should be measuring.

And, of course, the only way to do this is to ask patients themselves.
Clinical practice guidelines provide expert recommendations that drive patient treatment decisions. Armstrong and colleagues convened two groups to look at clinical guidelines in dementia – one with patient representation and one without. The group that included patients picked out specific patient-relevant topics that the group with no patient representation failed to identify. This report highlights the essential role patients have in developing clinical recommendations that are fit for purpose. It also questions the acceptability and value of guidelines that do not involve patients early in the development process.
Building the evidence base for the value of PE in medicines development also featured in the paper by Levitan and colleagues. They demonstrated that PE activities which may reduce protocol amendments, improve recruitment, adherence and retention can have considerable financial value – over 500-fold increase compared with investment in PE – and accelerate time to launch.
Mader and colleagues provided a tantalising view of what patient-led research could look like. They report on the feasibility of the Patient Led Research Hub – an initiative that allows patients and the public to propose research questions and to design and conduct their own research with support from research professionals.
Publications this year also showcased the increasing maturity of PE and a collaborative move from ‘talking’ to ‘doing’. Huang and colleagues presented a proposed multi-stakeholder framework for clinical trials recruitment planning (developed by the Clinical Trials Transformation Initiative; CTTI), with actionable recommendations and tools.
The Economist Intelligence Unit put patient-centricity at the heart of their in-depth report on the future of drug development. A chapter dedicate to patient-centric trials highlights the need to involve patients in trial design and in defining outcomes that are meaningful to patients. The report emphasises the potential of this approach to improve the quality and relevance of research to patients, as well as boosting participation in trials.
as patients, carers and members of communities

building real world effectiveness data – for example - following a decision of conditional reimbursement, incorporating patient relevant outcomes.
Health services in Ireland are including patient voices in decision making to a greater extent now than ever before. The HSE’s National Strategy for Service User Involvement 2008-2013, the National Patients Forum, the National Patient Experience Survey and the IPPOSI-led Patient Narrative project are examples. Furthermore, the Department of Health is working with IPPOSI and other relevant patient-led organisations in areas such as rare diseases, dementia and others.
Training required to get the expertise required to contribute to research & development projects

Listening exercise – first time we had patients identifying their needs, and communicating back to HCPs
Response rate of 51% shows the willingness to have patient voices heard
Majority of patients have confidence in the HCPs that treat them
83% of patients were treated with dignity and respect
96% of patents felt that their hospital ward was clean
Journey into the hospital is not as good, hard to recover
Issues with discharge – 40% had a bad experience – a lot based on communications and information – can be fixed
Context is how do you transform services towards what people want, when they want them.
A vision, remit, and outputs of a new enterprise like PPI in Ireland has yet to be devised.
10,000 Voices in NI - 14,000 patients have now completed this survey
CIHR - Stephen Robbins
Usual quote re: Permed: Right treatment, right time, right patient
Add: at the right location, by the right provider, at the right cost.
Greater focus on access & equity

Minimizing disruption to the patient
Negotiating goals

Is stratified medicine really targeting patients unmet needs?
Is the promise a fulfillable one?
If you happen to fit the bill (eligible for a trial), then great, but what about the others still in the dark?
Will PM affect the standard of care if its only for a small cohort?
If the trials are more efficient, we will know much quicker what the benefit will be..
Need confidence that the ‘off you go, flog it’
I’ll let you into a secret – patients are not interested in drugs that don’t work – other stakeholders are interested in keeping the status quo – if they are not working, then you are simply wasting time…so concentrate on the things that do work
Study recently estimated over 50 things which are on the NHS, which have been categorically shown not to work..

Regulators would prefer that biology follows the law, rather than the other way round…

From the patient view, I see the possibility of a life-changing intervention, being snatched away from me..

Ivacaftor is a clear black/white decision
For others, the benefits are less clear.
Its going to be incredibly difficult to organise development programmes to demonstrate the benefit and the value for money for making these available for routine prescription

When you are developing a trial, if you plan your trial based on my life, the things that really affect my life, then I am far more likely to be involved and support.

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