Research is not an end in itself. Many researchers and their managers might think it is but involved patients should not be trapped into this mindset.
We are patients involved in research because we believe that we can help change things for the better. We believe that better treatments can be identified by good science. We believe that better care can result from good quality research. We believe that better processes and systems can be created. We cannot do this all by ourselves, we can only do it in partnership with the professionals. They may be managers, nurses, scientists, doctors, educators, inspectors, commissioners, policy makers or politicians. Research gives us the evidence to support change.
As an involved patient you should never lose sight of this important vision, we are in the business of transforming patient care for the better. Research is a means to that end, not an end in itself.
Sadly the myopic draft standards for patient and public involvement being assembled by NIHR do not address this purpose. The view presented is all inward to the research process, nothing abut what research can achieve to support change. NIHR have acknowledged that the standards are draft and will change. A positive step, I hope the next draft will address Purpose.
Involved patients must be asking questions about Purpose, asking why a research project is being undertaken? What are the issues to be faced in extending a successful study into routine clinical practice? Researchers without clinical experience may have limited horizons and no understanding about practicalities. Patients can bring that perspective, after all usually they will have been there. There is a second PPI in our debate – Purpose, Plan, Impact.
Plan brings me to a second point, a practice I would like to see which would encourage researchers to think outside their usual boxes. Every research project should have a plain language lay summary written at the outset, even before the project is approved. It states what the Plan is. It is part of the public face of the project, on its webpage, in any patient information and consent process, and in the final study report. It makes clear what the study will achieve, for patients. As a project progresses the summary would be regularly reviewed and updated so that everyone will know how it is progressing. The lay summary should also include the why and how of implementing positive results. That should be part of the Plan even if that is expressed only as ambition. That will be how Impact is delivered.
A lay summary used in this way would hardly affect research processes but it would change the focus of research quite subtly. The project would always be associated with its ambition, its anticipated Impact. It would have PPI – Purpose, Plan, Impact.
Let us hope that the next iteration of the NIHR Standards will capture some of this quality, will look outwards not inwards, will focus on Purpose, Plan, Impact.