Introducing PPI in Research – Purpose, Plan, Impact

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.

We don’t need PPI Standards like these?

I have worked as a patient involved in research for over 15 years now. I have been involved in clinical/medical research at just about every level possible locally, nationally and internationally. I like to think I have helped things change and the responses I have had from the professionals would seem to confirm that.

It was interesting to find out about the development of a Patient and Public Involvement Standards process being developed by NIHR (the National Institute for Health Research) and INVOLVE, the national organisation for promoting involvement in research. There is an on-line questionnaire and a website. The objective is to provide guidance to organisations setting up a patient involvement process.

In all good faith I downloaded the documents and began to read. Dull, dull, dull. I have completed the on-line survey but there is so much more to be said, so much that was missing.

 It should sparkle with ambition. It doesn’t. In my experience there is always a danger of a standards process becoming pedestrian. This one is mechanistic and will create a bland environment where achieving the minimum standard is the highest ambition. It will open the way for tick-box micro-management of daily involvement activity and no-one will ever address the question “why are we doing this?”.

Patient and public involvement is about transformation. I know this is ambitious and hard to achieve but it can be done and standards, if we have to have them, must aim high.

Patient involvement demands Board level involvement, not disinterested oversight. Senior managers must identity involvement opportunities within their direct remit. If only junior managers are doing it PPI will wither and fail. Senior managers should be asking every day “where can I involve a patient/public member” not “why should I involve…”

How can we attract high achievers as PPI managers? Absolutely critical for the future.

How do we position taking the role of a PPI manager as a ‘must do’ role for future chief executives?

As I know very well involved lay people can be great at finding gaps which surprise the professionals and open them up. Working together transformation becomes possible. You cannot train for this. You have to find the right people and create or manoeuvre the situations where they can do it. These people can be inspired by the opportunity, they won’t be inspired by a tick-box life.

I welcome standards if they help widen involvement opportunities and create structures that enable and encourage beneficial change. This exercise, as it stands at the moment, is about the detail of daily transactions, not about transformation. It will drive patient involvement into the side-lines.

NIHR – please start again.

Consultation web-page

The Standards survey