
Patient involvement ‘would improve medicines R&D’
pharmafile | January 15, 2016 | News story | Medical Communications, Research and Development |Â Â EUPATI, Patient and Public Involvement, R&DÂ
A new study has revealed a belief among pharma industry executives that greater involvement of patients and the public could improve medicines R&D.
The study, published in BMJ Open, is one of the first to explore pharmaceutical industry professionals’ beliefs about patient and public involvement (PPI) in R&D of medicines across, at a number of European companies.
Although still an emerging area, patient involvement in medicines R&D – in which patients are actively involved in research projects and in research organisations – is most visible in public research environments (for example the UK’s National Institute for Health Research) and areas where existing treatment options are limited, such as rare diseases.
There is growing interest in pharma in how to make medicines R&D more patient-centred. For example, a survey in 2014 found that 73% of workers in the pharmaceutical industry believed that industry needs to change its relationship with patients, and 85%, that increasing the patient-centredness of medicines R&D is important for its sustainability.
Researchers interviewed 21 pharmaceutical industry professionals, representing 11 companies: four in the UK, four in Spain and eight in Poland, and several who hold pan-European roles, about their attitudes regarding Public and Patient Involvement (PPI) in medicines R&D. The interviewees came from a range of pharma disciplines, including regulatory and medical affairs, communications, policy and patient relations, and research.
Most of the professionals had positive beliefs about PPI, and many were optimistic that greater involvement of patients and the public would contribute positively to the medicines R&D process. And those in the UK expressed more certainty about the benefits and value of PPI than those in Spain or Poland or with pan-European roles.
The interviewees also highlighted potential barriers to further PPI activity within the sector, including a sense that the concept was too intangible at the moment to persuade industry leaders of its importance and benefits; that organisational codes of practice currently represent obstacles to PPI; and that it may be difficult to engage public and patients if they have negative views of the sector.
The researchers, a team from the University of Manchester, GlaxoSmithKline and market researchers, say the interviews highlighted potential barriers to further PPI activity within the sector, “including a sense that the concept was too intangible at the moment to persuade industry leaders of its importance and benefits; that organisational codes of practice currently represent obstacles to PPI; and that it may be difficult to engage public and patients if they have negative views of the sector.”
The study is part of the wider European Patients’ Academy on Therapeutic Innovation (EUPATI) project; a patient-led initiative which involves a unique European team of academia, patient advocacy organisations and the pharmaceutical industry.
Jane Griffiths, group chairman at Janssen Europe, Middle East and Africa, says: “Patients should be a partner in drug development, not just the subjects of studies. For different reasons, including cultural conservatism and concerns about regulatory barriers, industries have been somewhat reticent to engage directly with patients in clinical development. This approach is changing as we seek to understand and integrate patients’ views, and EUPATI is supporting patients with tools and knowledge for their meaningful involvement.”
Lilian Anekwe
Examples of opinions
UK pharma interviewee, in regulatory affairs
“I’m certainly an advocate for them being more involved at the regulator side, but also why not work more closely with industry so industry knows before the regulators tell them the patient perspective on whether they come to market is X, and we’ve got a closer voice for that.”
Pan-European pharma interviewee, in medical affairs
“It’s nearly a conflict of interest, really with patient-based organisations, that’s what they want is to have some control and to be able to drive research in the direction they think it’s most important and should be going. I think it’s especially difficult in the post-marketing space where as industry we have to generate evidence for EMA or payers. I think sometimes that what is not always well understood is the environment in which pharmaceutical industries have to operate”.
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