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

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. Patients
should be at the center
of any health research.
Why and how?

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. 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. 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. 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. 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. 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. 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. 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. Patients
should be at the center
of any health research.
Let’s do it.

12. Get to know us!
Jan Geissler
EUPATI Director
& Patient Advocate
Web:
www.patientsacademy.eu
jan@patientsacademy.eu
Twitter: @eupatients
as well as: