It is important to involve patients and the public in pharmaceutical medicines research and development. Suzanne Parsons and Bella Starling examine who is interested, who is not and why.
Involving patients and the public as active partners in their healthcare and in healthcare research has become an increasingly important policy issue in the last two decades.
Professor Dame Sally Davies, Chief Medical Officer for England and a strong supporter of public involvement, explained: “No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost effective.”
However, the best way to do this, who to involve and how to demonstrate impact are issues that are still open to study and debate. In recent years the pharmaceutical industry has also become increasingly interested in how to involve patients and the public in its processes. As a sector, it currently faces considerable challenges to its sustainability. Increased patient and public involvement (known as PPI), is viewed as one way of tackling this, as patients are believed to offer new insights and solutions, thereby promoting innovation.
Since 2012, we, as part of the Public Programmes team at Central Manchester NHS Trust, have participated in a European consortium project, funded by the Innovative Medicines Initiative, called EUPATI, the European Patients Academy on Therapeutic Innovation. EUPATI aims to increase patient involvement in, and public knowledge and understanding of, medicines research and development (R&D) across Europe. The consortium is made up of 30 project partners from patient organisations, academic institutions (including Central Manchester Foundation Trust and the University of Manchester) and pharmaceutical companies.
Our role has been to lead a programme of social research that explores patients’ and the public’s information needs and preferences regarding PPI in medicines R&D. We also explored the perspectives of other key stakeholders – the pharmaceutical industry, healthcare policymakers and clinical research professionals – on these issues.
An essential part of this work was to explore existing public knowledge and understanding of medicines R&D and the interest of the public across Europe in learning more. So we surveyed public audiences in six European countries – Great Britain, France, Spain, Italy, Poland and Germany. We reached over 7000 people, online, in six languages. Our findings have recently been published in BMJ Open.
We learnt that the public’s reported knowledge of medicines R&D was low, with three-quarters of those surveyed feeling that they had little to no knowledge of this area. However, we also found that those who had experience of medical research participation appeared to have greater knowledge, suggesting that research experience may help to increase awareness. However, amongst those surveyed, rates of medical research participation were low, ranging from 4% in Germany to 10% in Great Britain.
We also learnt that despite these current low knowledge levels, the public is interested in learning more about medicines R&D. For example, almost half of all respondents in all countries reported interest in learning more about medicines safety, personalised and predictive medicine, drug discovery and health technology assessment. Finally, we learnt that those who reported the least knowledge (women and older people) appeared to be the most interested in learning more.
Our findings suggest that as public interest in medicines R&D appears to be greater than current knowledge, attempts to increase public knowledge are likely to be welcomed. However, our data also suggest there are limits to public interest, as at most 60% of respondents were interested in learning more about a particular aspect of medicines R&D. This finding may reflect the views of those survey respondents who currently do not have any health issues and therefore may feel medicines R&D is not relevant to them. It may also suggest a need to stimulate interest in this area amongst the wider public.
Secondly, experience of medical research participation appeared to increase current knowledge and interest in learning more, possibly through an increased familiarity with the research process. This emphasizes the importance of developing public information about this area that not only raises awareness, but also fosters informed choice regarding participation and involvement in medicines R&D.
Finally, even if many of those who completed our survey are not currently patients they are likely to be the patients in the future. Therefore, increasing public awareness of, and interest in, medicines R&D is likely to be valuable in their conversations with their doctors regarding treatment, if not now, then in the future. For example, such information may increase the public’s understanding of the decisions made regarding the cost and availability of new medicines. This, in turn, can facilitate their future active involvement in medicines R&D, if they so wish.
The findings from our research are continuing to inform the development of education, training and public awareness-raising materials for EUPATI. We are also continuing to submit the findings from other aspects of our work for publication. Most recently we have submitted a qualitative study exploring the pharmaceutical industry’s views about patient involvement. This is important research that needs to be pursued further to assist the public to understand and take more responsibility for their own healthcare.