The purpose of medicines is to improve patients’ lives. Despite the increasing number and scope of patient involvement initiatives, there is no accepted master framework for systematic patient involvement in pharma-led medicines development. Patient engagement is more productive, but inconsistent and fragmented on a broader level. Incorporating the patient perspective in healthcare research is strongly promoted by policy makers, funding bodies and international regulators. Many theoretical benefits from patient involvement in research have been reported, such as improving the relevance of research questions, improving the recruitment of study participants, and increasing the chances for funding and dissemination of results. In addition, there is an increasing recognition of the essential role of patients in outcome research.
Patients have a personal experience of disease that is not available to most researchers, but that complements researchers’ analytical skills and scientific perspective. Patient or consumer involvement in research is therefore recommended, with theoretical benefits being that research grounded in relevant clinical need, patient perspectives, and patient priorities will enhance study design, practicality, recruitment, data interpretation, and dissemination. Patients can be involved in research by identifying and prioritizing topics, reviewing grant applications, analyzing and interpreting data, and disseminating findings. Involvement can mean consultation, collaboration, or consumer-led research.
Involving patients in research projects improves both the methodology and outcomes of the research, and offers invaluable additional insights. Contributions by patients to the design, implementation and evaluation of research lead to effectiveness, credibility, and often to more cost efficiency as well. It is essential to ensure that high quality research brings real benefits for patients and their daily lives.
Findings from these types of studies, where patients are considered partners, suggest that personal feedback from researchers as well as patients indicates that including the patient perspective in scientific projects is not easy. And although many people involved are convinced of the potential benefits of patient participation, they are still struggling with the question of ‘how to do it’.
Patient involvement can only be successful if patients are sufficiently prepared and supported to make a valuable contribution. Not only do patients need adequate support, but researchers also need help with practical tools and information about the conditions that make patients’ participation worthwhile. The involvement of patients in research should be an active and equal engagement between patients and researchers right from the start of the project. Increasing number of studies are now being conducted involving patients in the research. For many reasons patient representatives are engaging with researchers to improve methodology and research outcomes, to give credibility to the results and to acknowledge the fact that for ethical reasons patients should have a say in health care and health research when it is expected that decisions in these areas will have an impact on their daily life. In the last decade patient involvement has been shown to be beneficial in different contexts of research. In particular, in the development of Patient Reported Outcomes, patients play a role in addition to that of study participants. They become collaborative partners in a process of co-production.
Effective patient engagement is a time consuming process and significant investment. The research team and patient partners need to be open to the risks and be flexible in this work together. Mutual trust and integrity are key components to keep open conversation flowing and offer the possibility of allowing the patient voice to impact research studies, which can be incredibly valuable in providing end-use of research results. Future studies with a direct impact on patient-centered outcomes research would directly benefit from engagement with patients as full-team members in their research programs.
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