Participation in clinical trials is one area of medical research where patient involvement is critical. However, the importance of collaborating with patients in other aspects of medical science, such as trial design and the dissemination of results, is only just being realised. In a recent issue of the MAP newsletter from the International Society of Medical Publications Professionals (ISMPP), Dr Rafal Swierzewski, a scientist, cancer survivor and supporter of patient advocacy, gave his perspective on how the patients’ role in medical research has evolved.
Dr Swierzewski explained how the term ‘patient involvement’ reflects the active cooperation between patients and relevant stakeholders, such as researchers, the pharmaceutical industry and regulatory authorities. These interactions can improve patient-centred healthcare services and policies by utilising the patients’ experience with a disease and its treatment to increase understanding and identify ‘unmet medical needs’.
Dr Swierzewski also described how the patient is increasingly being considered in the development of publications, with some journals requiring authors to include lay summaries in their manuscripts to enhance communication with a non-specialist audience. Patients may be included in the publication process as co-authors or peer reviewers, with the aim to focus on the relevance of the publication for the broader population. Dr Swierzewski reflected how this raises both challenges and opportunities for patients and publishers and concluded by highlighting that the future of patient centricity in medical science is evolving.