Involving patients and the public as active partners in healthcare research has become an increasingly important policy issue in the last two decades. Recent research as part of the EUPATI initiative is addressing this head-on in Europe.
Professor Dame Sally Davies, Chief Medical Officer for England is a strong supporter of public involvement. In Exploring Impact: Public involvement in NHS, public health and social care research report by INVOLVE, Dame Sally explains: “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.”
The best way to do this, who to involve and how to demonstrate the impact of involvement 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. The rhetoric behind patient involvement in pharmaceutical R&D is moving beyond patient engagement as a method to boost clinical trial recruitment, towards a partnership approach with patients and patient organisations as equal stakeholders in the A to Z of medicines development. As a sector, patient and public involvement (known as PPI in academic circles) is increasingly viewed as one way of promoting innovation by offering new insights and solutions.
But where do we start? Information and engagement as a route to involvement
Since 2012, we, as part of the Public Programmes team at CMFT, have participated in the European Patients’ Academy on Therapeutic Innovation (EUPATI). 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.
We are leading a programme of social research that explores patients’ and the public’s information needs and preferences regarding engagement and involvement 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. By understanding the landscape, EUPATI aims to furnish patients and members of the public, and professional stakeholders, with the tools to understand, navigate and promote public engagement and involvement in pharmaceutical R&D.
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 almost 7000 people, online in six languages, perhaps the largest study of its kind. Our findings have recently been published in BMJ Open.
So, what have we learnt about public knowledge of medicines R&D?
Perhaps unsurprisingly, 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. 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 suggests 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 among 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 emphasises the importance of developing public engagement with this area not only to raise awareness of medicines R&D, but also to foster an 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 public appreciation 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.
So, what next?
Our recent publication was just the first in the outputs of our research in this area. A qualitative study exploring the pharmaceutical industry’s views about patient involvement is soon to be published, followed by a mixed methods study exploring patient advocate involvement in pharmaceutical R&D.
The findings from our research continue to inform the development of EUPATI, which will focus on education and training to improve the availability of patient-friendly information for the public, patients and patient advocates and expert patients, ultimately empowering people to understand, contribute to and become involved in medicines R&D.
EUPATI will:
- Develop and provide user-friendly information and education resources on the medicines R&D development process that will further understanding of these issues in culturally appropriate ways in 12 countries in Europe
- Create a public library of patient-friendly information on medicines development and research in the seven most common languages in Europe
- Establish a sustainable website and information service to provide up-to-date information
- Show how to get involved in research and development, to support ongoing and future medicines and clinical trials.