TAKING PATIENTS AS PARTNERS IN RESEARCH

Despite the increasing number and scope of patient involvement initiatives, there is no accepted master framework for systematic patient involvement in pharmaled medicines development. Patient engagement is more productive, but inconsistent and fragmented on a broader level. Incorporating the patient’s perspective in healthcare research is strongly promoted by policy makers, funding bodies and international regulators. Patients have a personal experience of disease that is not available to most researchers, which complements researchers’ analytical skills and scientific perspective. Involving patients in research projects improves both the methodology and outcomes of the research, and also offers invaluable additional insights. Contributions by patients to the design, implementation and evaluation of research leads 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. Increasing number of studies are now being conducted involving patients in the research. Effective patient engagement is a time consuming process and involves 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 offers 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.