Partnering with Patients: Designing, Participating in and Reporting Health Outcomes - ISPOR 2013, Jan Geissler

663 views

Published on

Partnering with Patients: Designing, Participating in and Reporting Health Outcomes - presented by Jan Geissler at ISPOR 19th ANNUAL CONGRESS in Dublin on 6 Nov 2013

Published in: Health & Medicine, Business
0 Comments
0 Likes
Statistics
Notes
  • Be the first to comment

  • Be the first to like this

No Downloads
Views
Total views
663
On SlideShare
0
From Embeds
0
Number of Embeds
33
Actions
Shares
0
Downloads
0
Comments
0
Likes
0
Embeds 0
No embeds

No notes for slide

Partnering with Patients: Designing, Participating in and Reporting Health Outcomes - ISPOR 2013, Jan Geissler

  1. 1. Partnering with Patients: Designing, Participating in and Reporting Health Outcomes ISPOR 19th ANNUAL CONGRESS, 6 Nov 2013 JAN GEISSLER Director, European Patients’ Academy on Therapeutic Innovation (EUPATI) Co-founder, CML Advocates Network / Leukemia Patient Advocates Foundation
  2. 2. Patients should be at the center of any health research. Why and how?
  3. 3. It is not just about clinical efficacy: Different patients want different things  Being part of decision-making? Ownership vs “fix it for me”?  A quick fix vs. long durable remissions?  Maximum disease control? Or fewer side-effects / better QoL?  Oral outpatient treatment or hospital based care?  Ability to work? Ability to have a social life?  Impact on the family? Family planning?  Reduce financial impact (travel, patient/carer’s ability to work)
  4. 4. Doctor/patient perception on impact on QoL differs Detecting Myeloma, ways to shortening an often painful and tedious patient odyssey: results from an international survey. Myeloma Euronet (2009). 314 physicians & nurses, 260 patients & carers, 43 countries
  5. 5. Doctor/patient perception on management of side effects differs Detecting Myeloma, ways to shortening an often painful and tedious patient odyssey: results from an international survey. Myeloma Euronet (2009). 314 physicians & nurses, 260 patients & carers, 43 countries
  6. 6. There are multiple ways to generate PRO/QoL data & drivers  PRO questionnaires („Traditional trial-specific model“)  Qualitative input from patient advocates („Advisory Board“ model“)  Quantitative research by patient groups („Community model“) …but how does this inform future research, priorities, trial design?
  7. 7. Patient organisations can largely contribute to clinical research  Before research starts • • • •  While research is done • • • •  Influencing public health / research policy Identification of indications, therapies, patient population, gaps Uncovering ethical and risk/benefit dilemmas Assessing endpoints (PFS vs OS) Managing expectations (hope or hype) Patient recruitment & compliance Side effect monitoring Patient & public confidence in clinical research After conclusion of research • Quality of life monitoring in “the field” • Assessment of value and (cost-)effectiveness Driving force Co-researcher Reviewer Advisor Information provider Research subject Source: PatientPartner FP7 Project (2010)
  8. 8. Patients – as key partners of researchers “ More needs to be done: rare cancers will never be a priority unless the patients make it one. Patients themselves must therefore play a larger role in driving forward the search for therapies. They are able to see connections that have eluded scientists. „
  9. 9. Where are the obstacles of patient involvement in R&D?  Legal barriers • Potential legal barriers • Perceived legal barriers  Hesitation amongst researchers • Will it make my research plans more efficient? • Perceived complexity vs. benefit • Lack of education of clinical developers on patient involvement  Relatively small number of patient advocates available to contribute to R&D process: training required.
  10. 10. EUPATI: Empowering patients on medical R&D     2012-2017 Led by European Patients’ Forum 30 consortium members PPP of EU Commission and EFPIA  will develop and provide, objective, credible, correct, up-to-date knowledge about medicines R&D  will build competencies & expert capacity among patients & public  will facilitate patient involvement in R&D to support industry, academia, authorities and ethics committees
  11. 11. Patients should be at the center of any health research. Let’s do it.
  12. 12. Get to know us! Jan Geissler EUPATI Director & Patient Advocate Web: www.patientsacademy.eu jan@patientsacademy.eu Twitter: @eupatients as well as:

×