Complex treatment decisions involve co-operative relationships between patients and their doctors, while doctors learn about new discoveries and best practice through interactions with a range of stakeholders in the medical community. These include clinical and professional bodies, local and global key opinion leaders, academic researchers, payers, and the pharmaceutical industry. There are opportunities for all these stakeholders to engage with patients directly to provide unbiased information so that patients are better equipped to understand their treatment options. This can improve the ability of patients and doctors to work together, for example by ensuring that they have a shared terminology for discussing the disease, treatments and symptoms. One example of this occurred at the 2014 ACTRIMS-ECTRIMS multiple sclerosis conference, where the pharmaceutical company Novartis ran a session in which clinicians and representatives from patient organisations discussed the extent to which the new clinical concept of ‘no evidence of disease activity’ is understood by, and would be useful to, patients with MS. At the same conference an international survey, commissioned by Biogen Idec, highlighted a consistent gap between patients’ and neurologists’ opinions about the quality of communication between them. While both were generally positive, patients rated neurologists 15 or more percentage points lower than neurologists rated themselves for statements such as ‘does everything he/she can to manage my multiple sclerosis’, ‘ makes sure I know everything I need and want to know’ and ‘ ensures I have a clear understanding of my options for therapy’34. Results like this suggest there remains a clear need to provide patients with more information to empower them in their treatment decisions.
case study: involvE INVOLVE (www.invo.org.uk) is a UK government-funded national advisory group supporting public involvement in medical and social care research. INVOLVE brings together experts to advocate, motivate, support and innovate in order to make public involvement an essential part of the research process. Their activities include producing guidelines and educational material, such as payment guidelines, guidelines for the reporting of patient and public
Genetic Alliance UK undertook a project to explore how patients with rare or serious conditions perceive the risks Citizen’s Jury made recommendations, which were subsequently tested with patients and carers across Europe35. They concluded that patients with rare conditions often have few effective treatments available, and so may be willing to take greater risks than the system currently allows; that they want to decide which treatment to take, but where the stakes are high and few treatment options are available.
recommendations & call to action Appropriate patient involvement should be a routine and universal feature of both publicly funded research and the drug development process. For EU-funded grants, there should be a requirement that due consideration is given to the appropriate involvement of patients in designing research goals and protocols, and in how results will be disseminated. Regulators should increase the involvement of patient representatives at all stages of the drug for conditions where few treatments are currently available. National funders of research should provide guidance on the appropriate engagement of patients in different types of research, and support the development of national support services to assist researchers in this engagement. Pharmaceutical companies and regulators should work together with patient advocacy groups to make information about clinical trials and the drug development process more visible and relevant to patients.
We call on European Policy-Makers, via the Institutions and Members States, to strengthen patient involvement in research, and in policy-setting and decision-making. 11