Bella Starling and Suzanne Parsons, Public Programmes Team Central Manchester Universities NHS Trust and the University of Manchester Public involvement in pharmaceutical research and development – can we move beyond Bad Pharma? The project is receiving 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.
Transcript
Bella Starling and Suzanne Parsons, Public Programmes Team
Central Manchester Universities NHS Trust and the University of Manchester
Public involvement in pharmaceutical research and development – can we
move beyond Bad Pharma?
The project is receiving 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.
Background
• Increased complexity of medicines R&D may have impacted on the speed of bringing medicines to patients
• Importance of identifying ways to improve the sustainability and usefulness of medicines R&D
• Increased patient and public involvement has been suggested as a key approach to this
European Patients’ Academy: Paradigm shift in empowering
patients on medicines R&D
Launched Feb ’12, runs for 5 years,30 consortium members,Funded by IMI JU
Will develop and disseminate objective, credible, correct and up-to-date public knowledge about medicines R&D
Will build competencies & expert capacity among patients & public
Will facilitate patient involvement in R&D to collaborate in academic research, industry research, authorities and ethics committees
Aims
• To describe the findings of a qualitative study exploring the beliefs of pharmaceutical industry professionals about patient involvement in medicines R&D
• To describe the work that EUPATI is leading to facilitate more active patient involvement in medicines R&D
Design and method
Qualitative case studies of key stakeholders in medicines R&D
Undertaken in the UK, Spain and Poland and on a pan-European basis
Mixture of focus groups and one to one interviews conducted in each country with
Patient representatives Patients and the public Clinical research professionals Policy makers Pharmaceutical industry professionals
Interviews with Pharmaceutical industry professionals explored Interviewees contact with the public in day to day role Beliefs about patients and the public's understanding of and information needs regarding medicines R&D Experiences of involving patients if any Beliefs about barriers and facilitators to patient involvement in medicines R&D
Findings
• 21 pharmaceutical industry representatives participated 1) UK (6)2) Pan-European roles (3)3) Spain (4)4) Poland(8)
• Key themes–Should patients and the public become involved in medicines R&D?–Does industry’s current relationship with patient groups need to change to facilitate patient involvement?–What are the challenges and facilitators to patient involvement in medicines R&D?
Should patients and the public become involved in medicines R&D?
+Ideas about how to involve
+No idea how to involve
-Patients should not be involved
ALL BELIEVED FEW WIDESPREAD AND CONCRETE PLANS WITHIN INDUSTRY ON HOW TO INVOLVE PATIENTS
Changing relationships between patients and industry
Current relationshipSome little patient contact. Others more depending on job function
Sponsor of patient group activities
Future relationshipDecreased distance between patients and industry
Increased patient involvement and partnership working, less emphasis on sponsorship
Facilitators of relationship changeRevision of existing professional codeIncreased opportunities for patients to become involvedIncreased readiness of industry to involve patients in medicines R&D
Challenges and facilitators to patient involvement
Challenges and facilitators to
patient involvement
Knowledge of R&DLow knowledge can lead to distrustDisagreement over level and amount of information needed for involvement
Patient related factors
Interest in meds R&DLess interest if well-established treatment for conditionLess interest if distrust industryImportance of increased transparency to dispel distrust
Pharmaceutical industry related factors
Understanding of and interest in involvement Uncertainty regarding aims, function and value of patient involvement
Beliefs about how to make patient involvement happenLittle clarity regarding which types of patients to involve and how to involve them
01/21/15
“We work with patient associations and the last one that I did started in 2001, and it’s amazing how things have changed in that the work that we were able to do together with the patient association then would be completely not allowed with today’s world. It was a much more intimate involvement in what we were doing and now whenever we discuss what we’re doing, it’s considered that we might be enticing them to take a drug.. “
Patient organisations & industry workshop:“Meaningful patient involvement in industry-led R&D”
23 July 2014
Turning aspirations into reality:•Benefits and impact of involving patients and advocates in the R&D process•Common concerns, hurdles and solutions•Codes of Practice
Develop guidance, framework, key indicators.20 case studies published in public domain!
Beyond EUPATI: Creating sustainable impact beyond
2016
Discussion areas
• What has your experience been of patient involvement in pharmaceutical industry led research?
• What can industry learn from public involvement in the NHS, public and social care research and vice versa?
• What are the important differences between patient involvement in publically sponsored research and involvement in industry sponsored research?
Discussion areas
• What are the opportunities and challenges for patient involvement in pharmaceutical medicines research and development?
• What are your top five recommendations for ways forward for patient involvement in pharmaceutical medicines research and development?
