PPI example: Patient and public involvement in the development of an intervention

Research project: Pituitary tumors – individualised treatment and person-centred care Gothenburg Pituitary Gland Tumour study (GoPT study)

Type of project: Complex intervention

Project time: 2015-

Eva Jakobsson Ung, who was Professor of Nursing Sciences, PhD in Care Science, Sahlgrenska Academy, University of Gothenburg, Member of GPCC's steering committee, Lead for research domain theoretical and practical development of person-centred care at GPCC and Vice Chair of GPCC's Person council for patients and relatives/carers.

In which project have you worked with PPI representatives?

I have worked with PPI representatives in a project at Sahlgrenska University Hospital Specialist Medicine Department. We are introducing a person-centred path of care there, for patients who have had surgery for pituitary tumor. These patients are cared for, often on a lifelong basis, at a unit called the Center for Endocrinology and Metabolism. After their surgery, they get a number of hormone disorders as a result, which are treated with artificial hormones. They need lasting support.

How many PPI representatives did you have and when in the project did you involve them?

In the development of the intervention, we had patients involved in two rounds, where we arranged workshops with 10-12 patients. Where we presented our ideas and thoughts on what support these patients might need, and got their views on these that were of indispensable help in the development of research materials.

How did you select and recruit them?

We recruited them with the good help of a nurse at the Center for Endocrinology and Metabolism who knew these patients quite well. We want patients with quite a long experience of living with pituitary insufficiency, and a mix of genders and ages.

As this is a multidisciplinary project, we also wanted diversity among the researchers and professionals who attended the meeting. Therefore, we had both doctors, nurses and researchers when we gathered with the PPI representatives.

In which part/which parts of the research cycle have they participated?

This is part of a complex intervention. When developing such a project, a rather large development of care practice is underway in parallel. So this was in the part where we set out to tailor the person-centred care based on the needs of these patients.

This intervention was going to be based on a contact nurse function, thereby providing increased continuity of care. It is like a parallel track to the research process.

First we had an initial meeting where we presented our thoughts on the content of various forms of support and so on, and then we sat down and tailored the intervention. Then we went back to our PPI reference group and went through this draft with them and checked "Was this what you meant" and then we changed based on the comments we received.

Now we are testing this intervention and it has taken many years. We follow patients for a year and only include 1-2 patients a week. Then, when it is time to interpret the results, we will create and involve PPI reference groups again, to get a valid interpretation of the results. I believe that we will benefit greatly from them also in that stage.

Why did you decide to have PPI representatives?

We wanted to increase the credibility of our intervention and we wanted to make sure that it would really benefit patients and their needs, and not just be based on a theoretical idea of what person-centred care is. We wanted to find out what person-centred care meant for this particular group of patients. And we wanted to create an intervention that worked and was sustainable. It was self evident to us that they would be involved.

What did the PPI representatives contribute?

They contributed by verifying what we scientists had thought in certain parts, but also by changing other things. For example, we have had a personal health book in which patients can document how they feel, their symptoms and estimations of different dimensions of life in general, where you can see how this develops over time. The PPI representatives had quite a few comments on this. Mainly about what was important or even relevant. A few things we had to cross out, because they didn't think they were OK.

How did you work with the PPI representatives in practical terms?

So we set this up in the form of a workshop. When involving patients, you can choose amongst a variety of educational approaches. After a brief initial overall presentation about what we wanted and why we needed their help, we had some open discussion questions. We wanted to avoid leading them into a way of thinking, so we didn't want to give them too much information. We then had about three open questions, which they discussed both in full group and partly with the person sat next to them. Then we followed up on what they had concluded.

On the second occasion we had roughly the same educational idea. But then we presented how we had developed the material based on their views from the first workshop meeting. And then they got to comment on it again. On the second occasion, there were also some new people, and they had new views, which was positive. One need not worry if the members of groups might change over time.

Both workshops were about three hours long, with a coffee break in the middle. You need quite a long time for reflection. There were very lively discussions. The patients involved also highlighted the importance of meeting each other. They all suffer from an unusual health condition and they rarely meet others with the same diagnosis.

We met in a nicer conference room at Sahlgrenska University Hospital. We wanted it to be on a more neutral ground, so not at their usual care unit, but nearby.

Did any problems/difficulties arise?

No, not at all, the opposite, in fact. But it did stir up very strong feelings. There were some people who started crying. As a researcher, you have to be prepared that that might happen. It was not a problem at all, but completely natural. You have to acknowledge it in a situation like this, where patients are going to talk about sometimes difficult experiences and memories.

What tips would you like to give other researchers who are thinking of involving patient researchers?

Above all, to do it. It gives a tremendous strength to have the patients along. They become like a kind of sponsors of the project. Dare to bring patients into different parts of the research project!

Is there anything else you want to bring up?

The involvement of patients and the public in all aspects of research is something of a policy issue in Swedish research. I would like to see research funding bodies include this as a requirement. The GPCC should take the lead in this and have it as a requirement for the projects we are funding. I think the time has come for this now. When we started this project a few years ago, patient involvement was extremely rare and was seen as innovative. But with my experience from GPCC and the fact that my research group is very creative and innovative, this was self evident to us. Finally, I would like to urge other researchers to dare to do this!