PREPARATION

Benefits to PPI Contributors

Every PPI contributor has their own reasons for being involved. Sometimes researchers express the concern that a PPI contributor will want a ‘cure’ for their condition and are worried that their research will not satisfy that desire. What is often expressed by PPI contributors, however, is a more sophisticated view of what their contribution will achieve. Members of the Dementia Research Advisory Team said, for example, that they anticipated that little of the research would benefit them directly but they didn’t want what they had suffered to make no difference to the next generation of people diagnosed with dementia. Of course, they wanted a ‘cure’ for dementia but that was not their expectation of the researchers; instead, they wanted their struggle to mean something and to be a catalyst for change for future generations.

A review of the literature by Ball et al (2019) around PPI identified the following motives among PPI contributors:

• wanting to help others and contribute to a better healthcare system;
• wanting patient perspectives to be reflected and have influence in research and ultimately on healthcare;
• interest in research and in contributing to scientific knowledge;
• interest in the healthcare topic, often because of personal experience.

Altruistic reasons like helping others and giving back to the community were common motivators, as was the belief that PPI can make research more meaningful for patients and facilitate tangible impacts to healthcare services. (Ball et al, 2019).

The relationship between a contributor and a researcher

Now that you are clear about the kinds of PPI activities that you want to do with contributors and the types of PPI contributors you wish to work with, it is useful to consider how you can build strong working relationships with those contributors.

While building good relationships is a complex and individual skill built over a lifetime, Rowell (2019) identifies three traits for strong working relationships:

• A clear, shared purpose
• A shared understanding of what type of relationship it is
• A commitment to sticking with it when times get tough

To elaborate on ‘types of relationship’, at one end of the scale, transactional relationships are pretty superficial where both sides are clear about what is expected and the goal is some type of exchange, e.g. with the cashier at a supermarket. On the other end are transformational relationships, where there is a deep level of interdependence, uncertainty, a need for trust and a responsibility on both sides to deliver. Your PPI contributors will form a relationship with your research team somewhere along this continuum.

Also, you may need to work with a PPI contributor group quite intensely on a project in the full knowledge that, once this project is over, the relationship will also end. Alternatively, you may need to convene a group twice per year but not have much connection to them at any other time during that year.

Activity

Prior to implementing your PPI activities, consider the following questions:

• Do you have a clear purpose that your PPI activities are trying to achieve? Do you have a clear purpose to your research? What is it trying to achieve? Can you articulate these things to the PPI contributors?
• Do you understand the type of relationship you are forming? What level of trust needs to be built? How intense will it be? What kind of time commitment will need to go into it? At what level will you be depending on the PPI contributors for the research to be impactful/successful?
• How do you deal with arguments and disagreements within a group? How do you react when people disagree with you? Do you see conflict as a healthy part of forming useful relationships or as something to be avoided?