RCSI Research Summer School - Dr Derick Mitchell - June 7th 2017
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A presentation concerning patient involvement and the patient voice delivered to students in the Royal College of Surgeons Ireland
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RCSI Research Summer School - Dr Derick Mitchell - June 7th 2017
- 1. PATIENTS – SCIENCE – INDUSTRY RSCI Research Summer School, June 7th, 2017 Derick Mitchell, PhD
- 3. “The perfect is the enemy of the good” http://metro.co.uk/2015/05/19/intermarche-campaign-celebrating-ugly-fruit-and-veg-is-brilliant-5204782/
- 4. Incorporating the patient voice • Hierarchical Rhetoric • ‘Walking 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
- 5. IPPOSI? Who?IPPOSI A patient-led organisation that works with patients, government, industry, & science to put patients at the heart of health innovation
- 6. Our Priorities 20 Actively advocate for improved + equitable patient access to Health Innovation Promote meaningful patient involvement in Health Research and Policy
- 7. 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
- 8. Irish public perception Irish general public’s attitude towards clinical research
- 9. Conclusions Public Survey • Limited understanding of how one can participate (donating blood/tissue, medical info.) • Ethical concerns • Unnecessary Risk IPPOSI patient members (anecdotal) (➕) • Access to innovative medicines & technologies • Improved quality of care (➖) • Benefit : Risk • Randomization • Compassionate Use • Ending of trial
- 10. 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
- 11. Areas covered by the Patients’ Academy 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: develop indication- or therapy-specific information!
- 12. EUPATI Toolbox – www.eupati.eu
- 13. EUPATI Toolbox – Content available Infographics Articles Fact sheets PowerPoints Videos
- 14. 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. Irish Patient Education Programme • 2017 Pilot • 20 places for patients / patient advocates • Pilot modules • Clinical Trials • Regulatory Aspects incl. Benefit:Risk • Health Technology Assessment
- 17. 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
- 18. Building a new Irish healthcare environment 2016 – Mental Health Local Recovery Groups (HSE) 2016 - Patient Narrative Project on Person- centered care (CSPD-HSE, IPPOSI) 2017 - National Patient Experience Survey in Hospitals (HIQA, HSE, DoH) 2017 - National Clinical Effectiveness Committee – PPI Values (DoH, NCEC) 2017 –Personas for Electronic Health Records (eHealth Ireland)
- 19. Building a new Irish health research environment 2014 - PPI paper - Irish Health Research Forum 2016/17 - PPI reviewers - HRB 2017 - PPI Ignite Funding – HRB + IRC 2017 – Scientific Advice – Patient Involvement – HPRA Health Information & Patient Safety Bill? Human Tissue Bill??
- 20. Take Home Messages Patient involvement can improve research quality Education + Training of both patients & researchers is key Support patient networks, communities & spread the word! @IPPOSI www.ipposi.ie
Editor's Notes
- Last year I presented on IPPOSI, and was joined by Joan Jordan – MS Ireland & EUPATI trainee, now fellow This year?
- Regulators and funders are doing it!
- 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.
- We recognise that establishing a functional biobanking or indeed an eHealth system that has the confidence of the Irish public is a challenge that cannot be rushed, particularly in light of the (potential) uses of patient information. It is our experience, in the area of clinical research, that patients are willing to donate samples, and share their data1 provided they receive in advance a clear explanation of: what the data will be used for; under what circumstances; and by whom it will be accessed. Everyone thought they were guinea pigs. But through the process of explaining what clinical research is, what it is for, they embraced the concept and were motivated to get involved. Same could be said for ehealth… Patients don’t have a problem with IP of a sample, so long a you are open and honest about how you are going to use it..
- Until we did the piece of research, we didn’t know. Everyone thought they were guinea pigs Through the process of explaining what clinical research is, what it is for, they embraced the concept and were motivated to get involved. Same for Connected health…
- The premise underlying PPI is that is improves the research relevance and quality, the accepability and feasability of research conduct, and improves the likelihood of uptake of results provide a different perspective - even if you are an expert in your field, your knowledge and experience will be different to the experience of someone who is using the service or living with a health condition make the language and content of information such as questionnaires and information leaflets clear and accessible help to ensure that the methods proposed for the study are acceptable and sensitive to the situations of potential research participants In addition to improving relevance and quality of research, it ensures that research is influenced by broader principles of citizenship, accountability and transparency.
- The Clinical Strategy & Programmes Division of the HSE initiated the Patient Narrative Project to partner with users of healthcare services in the design and delivery of these services. The Patient Narrative Project is a three phase project to progress to partnership working listened to the experiences of people who have had to use multiple health services over time or at one time and through the words of the service users and caregivers developed a set of statements that clearly articulate what users of the Irish health service expect from services and staff. In addition a definition of person-centred co-ordinated care that is written not just for the experts, but for patients, people, families and carers The goal is that the descriptors + definition of what good care and support that is centred around the needs and preferences of the service user/patient looks and feels like for people will be adopted nationally. They will be used to guide policy, strategy and design, and act as a guide to what teams at local levels should be aiming to achieve practically, in their efforts to integrate services around patient, family and carer needs. There are three themes of descriptors: ‘Care for me’ focused on the direct relational experience with healthcare professionals. ‘Care I am confident in’ refers to the actual experience of care in terms of skills, quality, accountability and continuity of care. ‘Care in my journey through healthcare’ represents care that is holistic, accessible at a time needed and takes account of the world of the person and their carer beyond what was traditionally considered health care, but where health has an impact (e.g. education, working life)
- 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
- 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