6. Feeding back to PPI Contributors

PPI is, at its heart, a relationship between PPI contributors and the research team and so there must be processes and opportunities for both groups to feed back to one another during the research cycle.

Keeping in touch with PPI contributors

Those involved with research appreciate that the research cycle, from initial agenda-setting through to dissemination and evaluation, can take years. PPI contributors, however, may not be aware of this. If the intention is to build a relationship with a PPI contributor over a period of time or across various projects, it is important to keep in touch with them.

How that is done, e.g. scheduled face-to-face meetings, a PPI newsletter, regular email contact, is dependent on the relationship but it is important to ensure that contact is maintained. It is important that this contact is not just when the researcher is seeking something from the PPI contributor. It is also important that any contact from the PPI contributor is responded to in a timely and appropriate manner.

The Centre for Research in Public Health and Community Care publication ‘PATIENT and PUBLIC INVOLVEMENT (PPI): Feedback from Researchers to PPI Contributors’ categorises feedback into four categories:

Acknowledgement

This is simply acknowledging the role of the PPI contributor in whatever part of the research cycle where they made their contribution. To be thanked is the very least that someone would expect from a PPI contribution. Also, by thanking someone, they are being reassured that their contribution has been received and understood. It also provides a positive impression which may help with future requests.

Outcome of study bids and ethics submissions

Many researchers include PPI contributors from an early stage and, if appropriately handled, the PPI contributor should feel that they have a stake in the success of the project. Because of that, they are likely to be curious about how the application processes are going and many would like, in their own way, to share in the success of an application.

Feeding back to PPI contributors about when they can expect to hear the results of funding bids and then feeding back with the comments from the reviewers is a useful way to help build the relationship with the PPI contributor and to help them to understand the realities of research funding and ethical review.

Some NGOs have reported back to the PPI Ignite office that this is a task that unsuccessful researchers often neglect. While disappointment is no great motivator, the PPI contributor can provide the kind of boost a researcher needs to begin the next application

Study progress

There are times when a research team feel that a project is ‘quiet’ and that there is nothing to report or times when they are ‘too busy’ to report. The PPI contributor may not be aware of the timetable or, if they are, may not be clear about what is happening during that stage of the process. If the PPI contributor is considered to be an interested supporter of the project, there is always something to report about what stage the project has reached and where it hopes to go next.

Keeping PPI contributors informed may prove very useful when it comes to the dissemination phase as they may need to articulate the process.

Impact of PPI contribution on study

As PPI contributors are often at one remove from the research project, it can be difficult for them to judge for themselves what type of impact they have had on the research or the research team. To know that their efforts have been worthwhile is fundamental to their willingness to be involved in future work and to understand how best to contribute to a research project.

7. Feedback from PPI Contributors

As the relationship builds between a PPI contributor and a researcher, it is hoped that the ability to have frank and open conversations about research projects will become second nature to both sides. This, however, takes time and deliberate trust-building so it is important to have ways, from the beginning to gather feedback from PPI contributors.

See a sample of a feedback form in the APPLY Section.