PPI Summer School, UL - Laura Kavanagh - June 2017
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This document discusses patient involvement in health innovation and research. It introduces IPPOSI, a patient-led organization that advocates for improved patient access to health innovation and meaningful patient involvement in health research and policy. IPPOSI runs various patient-led activities and provides training to educate patient communities. The EUPATI program also trains "expert patients" on medicines research and development to take on leadership roles advising organizations. While challenges remain, patient involvement can provide different perspectives to improve research quality by ensuring methods and outcomes important to patients are considered. Education and training of both patients and researchers is key to furthering patient involvement.
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PPI Summer School, UL - Laura Kavanagh - June 2017
- 1. PATIENTS – SCIENCE – INDUSTRY UL Health Research Institute Summer School, 22 June 2017 Laura Kavanagh, Research & Advocacy
- 2. IPPOSI “Turning Patients into Partners” A patient-led organisation that works with patients, government, industry, & science to put patients at the heart of health innovation
- 3. Our Priorities 20 Actively advocate for improved + equitable patient access to Health Innovation Promote meaningful patient involvement in Health Research and Policy
- 4. Patient-led activities Health Hacks Workshops Conferences Consultations Round-tables Working Groups Training Days Rare Diseases eHealth Clinical Research Health Information Health Economics Patient Registries Biobanking
- 5. Irish public perception Irish general public’s attitude towards clinical research
- 6. Incorporating the patient voice Call to action: • Address the hierarchical rhetoric • ‘Walk the walk’ at the highest possible level Challenges: • Decision-makers never want to change their processes • Patients are not trained in policy, R&D dialogue • Many patient orgs are not focused on policy/R&D issues
- 8. Educated Patient Communities IPPOSI Training for Members • Clinical Research • Health Technology Assessment • Pharmaceutical Code of Practices • Health Informatics (coming soon!) EUPATI produces Expert Patients on Medicines R&D • Training & Education • Disseminates through national platforms
- 9. EUPATI www.eupati.eu • The EUPATI Toolbox on Medicines R&D • The EUPATI Patient Expert Training Course
- 10. Patient education provided by EUPATI 1. Medicines development process from research to approval 2. Personalized and predictive medicine 3. Drug safety and risk/benefit assessment of medicines 4. Pharmaco-economics, health economics and health technology assessment 5. Design and objectives of clinical trials (& roles of stakeholders) 6. Patients roles & responsibilities in medicines development …and NOT: indication- or therapy-specific information!
- 11. EUPATI Toolbox - Content Infographics Articles Fact sheets PowerPoints Videos
- 12. 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.
- 13. Creating patient leaders EUPATI now expanding beyond the EU… Interest coming from Turkey, Cyprus, Israel, Russia and Brazil
- 14. Irish Patient Education Programme • 2017 Pilot • 20 places for patients / patient advocates • Pilot modules • Clinical Trials • Regulatory Aspects incl. Benefit:Risk • Health Technology Assessment
- 15. Will it make any difference? Patient involvement can: • Provide a different perspective • Make language + content of research information clear and accessible • Help to ensure research methods are acceptable and sensitive • Help ensure that research uses outcomes that are important to the public • Help increase participation in research in general
- 16. UL Health Research Institute Summer School, 22 June 2017 WORLD Café
- 17. Patient experts in action • Workshop participants initially divided among 2/3 tables • After 20/30 minutes, groups rotate to a new table • EUPATI Fellows will facilitate different discussions around PPI in medicines R&D at each table • Group members are invite you to provide comments 1) orally 2) visually on the paper provided (post-its and markers) • The 2nd/3rd groups visiting the table will be provided with a summary of discussions to date by the EUPATI Fellow • EUPATI Fellows – with your input – will share interesting points, further questions/challenges, proposed solutions to a plenary
- 18. Take Home Messages Patient involvement can improve research quality Education + Training of both patients & researchers is key Support patient networks, communities & spread the word about patient involvement! @IPPOSI www.ipposi.ie Provide your contact details – future community of practice
Editor's Notes
- Welcome to the workshop – Patient Experts in Action Filling in for my colleague, Derick Mitchell Leave Weather – windows, water Registration form Today we want to share some of the patient involvement topics were engaged around, and we want to ask you for your views on these topics 90 minutes 60 minutes for discussions in small groups 30 minutes for further discussion as a whole group Report
- Why are we here before you today? Established 10 years ago – IPPOSI is a patient-led organisation that works with patients, academics, industry and other partners [government, regulators] to put patients at the heart of health innovation. - Description from our strategy, words chosen carefully In the past, patients have been informed, consulted, engaged – IPPOSI exists to go one step further and to support patient advocates to become partners in decisions which determine the future of healthcare.
- IPPOSI has a number of priorities – I highlight two important ones Actively advocates….. Promote meaningful….. And it is around these priorities [and others] that our broad membership is engaged – 100 patient organisations, 200 academics and science partners, 20 pharmaceutical companies
- To advance our priorities - IPPOSI provides a structured way for our members to interact Each year we bring patients together with researchers, companies, regulators and government via workshops, discussion groups, training days and conferences These events provide an opportunity for our members to collectively discuss and agree on how to improve policy, legislation and regulation around the development of new medicines, products, devices and diagnostics for unmet medical needs. Topics range from clinical research to health economics to rare diseases
- So now you know a little bit about who we are and what we do – I guess an obvious question is - How do we know patients want to be involved? Back in 2008, we undertook research into public perceptions in Ireland towards clinical research The findings were clear – people – patients – were keen to be involved - but equally clear was the realization that patients knew little about how or where they might be involved More recently EUPATI (a project which I’ll talk more about in a moment) surveyed 7000 Europeans – the findings were similar – educate us, we are interested!
- So if we accept that patients want and deserve a seat at the table – our next line of enquiry must be to determine how we can make this happen, as well as what may be some of the challenges to making this happen Here one call to action must be to…..bridge the divide between the patient community and researchers, the patient community and industry, the patient community and regulators, government. Patients are not the problem, patients can be part of the solution, Their insights are unique, their experience is lived. And as such, all healthcare partners must be encouraged to ‘walk the walk‘ and incorporate patient involvement across their organisations and processes – and progress has been made in this respect with regulators and research funders in Ireland taking forward patient involvement agendas. But while this is a worthy goal it is also a tall order……changing the way decisions are made is always difficult, finding patients who are comfortable voicing their opinion in public is another
- Looking at the two pictures above – you can see how far patient advocacy has come! The HIV/AIDS advocates of 1980s and 1990s have been joined by patient advocates who now represent many different communities and conditions. Patient advocates have moved from the streets back into the classroom. IPPOSI exists to help grow a wider and stronger community of patients who are willing and able to advocate for their interests with research and industry partners.
- How do we help equip patients with the skills and the knowledge they needed to make a meaningful contribution There are two main strands Annual IPPOSI training programme – details of membership and upcoming events can be found at www.ipposi.ie EUPATI patient expert education
- EUPATI is a European project – which IPPOSI has been heavily involved in for the past 5 years EUPATI makes two important contributions towards patient education and training The EUPATII toolbox – the front page of which can be seen here The EUPATI course – which 9 Irish patients have benefitted from and become EUPATI fellows – two are in the room today and will be guiding our discussions later on
- A selection of the tools which can be found in the EUPATI Toolbox at www.eupati.eu Over 3000 pieces of content which is being added to each day!
- EUPATI course – run twice since October 2014 – admitted 100 students (despite receiving many more applicants). 3rd cycle due in 2017. The course engages students in e-learning around the topics mentioned on the previous slide and involves two week-long face-to-face training programmes. The impact which the EUPATI course among the 100 patients undertaking the year long programme of study
- EUPATI is European – so it’s not just helping upskill the Irish patient community – but it’s working across Europe to provide patients with the skills and knowledge they need to get involved in medicines research and development
- Inspired by the idea behind the EUPATI course, but keen to adapt it to the needs of Irish patients – in 2016 IPPOSI set about creating an Irish patient education programme
- The belief is that PPI improves the research relevance and quality, the acceptability and feasibility of research conduct, and the likelihood of uptake of results
- Emerging patient-centered movement Not a trump card for justifying/tolerating pseudoscience Patient-centered does not mean facilitating and legitimizing the provision of unproven therapies and “magical thinking” It does not mean providing patients with unscientific, placebo-inducing treatments It does mean, among other things, respecting the patient enough to provide an honest assessment of what the best available evidence says. Healthcare providers are legally required to do so through informed consent process