1+1=3: How UMCG Researchers Experience Patient Participation Training

PGOsupport trains researchers at UMCG (University Medical Centre Groningen) in active patient engagement. Why invest in this? What are the takeaways for the participants? And how does it help the research forward?

Mirjam Plantinga, UMCG initiator

"The patient expert’s contribution in particular is greatly valued"

"Drawing on our vision to involve patients as much as possible in healthcare, research and education, we started this training in 2019. Researchers learn in a very practical way how to involve patients in their research and discover the added value of patient participation.

Hands-on junior researchers run up against other things than experienced agenda-setting researchers and professors. Each course is therefore targeted at a specific group with similar learning objectives: PhD researchers, fundamental researchers, clinical researchers and research coordination and agenda-setting staff. That approach works well.

The participants give the course an average rating of 8.1. The patient expert’s contribution is also greatly valued, as they can explain problematic issues from their own experience. That produces eye-opening insights. Researchers, for instance, often do not realise how onerous their questions can be for patients.

To make them more aware of this, they are asked to put themselves in the patient’s shoes during a research pitch. That’s very effective! The course is now a fixture in the training offerings of the Wenckebach Institute which organises our education. That way, new generations of researchers are trained from scratch to take a broader view. Hopefully this will inspire more colleagues in our hospital and elsewhere to embrace patient participation in their own setting."

Rob Hagen, Co-trainer/ patient expert

"Look at soft data as well as hard data"

"Intuition tends to guide researchers in determining at what specific moments they want to involve patients. But that restricts the patient’s scope for making a genuine contribution. And there’s no point in involving patients after everything has been decided.

It’s pitfalls like these that I flag up during the training. I also test the theory against practical experiences. To this end, I urge the participating researchers to look at soft data as well as hard data. Don’t just look at survival percentages and biomarkers, but also at patient reported outcome measures, outcomes that typically relate to quality of life.

That side of things, though not new for researchers, often falls out of their scope because of their focus on hard data. Moreover, I also encourage them to be creative in the methods they use for engaging patients. Surveys and questionnaires are by no means the only ways to sound out patients. Consider setting up a focus group, for instance.

Face to face interaction gives you a better chance of getting a real conversation going with patients and arriving at important new insights for your research. Be open about your own uncertainties in that conversation and make it clear that you don’t have the answers to all questions. That’s nothing to be ashamed about. And my final tip for participants is: use the infrastructure and the networks of patient organisations when you as a researcher want to share something with patients. You could, for instance, offer to write an article together with a patient for the patient association’s magazine."

Nic Schräder, PhD researcher at UMCG

"The training triggered me to give my research even more structure"

"Since 2014 I have been studying the medicinal use of cannabis for patients with a hereditary blister disease (Butterfly Skin). Patients with this disorder are born with fragile skin and mucous membranes. The slightest touch is enough to give them blisters or wounds that don’t heal easily. Which, in turn, leads to scars and chronic infections.

There is no curative treatment as yet. That’s why I, together with a number of young colleagues, am studying what patients need in their day-to-day lives. This, in other words, is patient-driven research to identify the patient’s needs in a structured manner. I now know that these patients use medicinal cannabis for a variety of reasons: to fight pain and itching, but also to stop wounds becoming infected or to sleep better.

During my studies I never learned how to carry out this kind of research together with groups of patients and patient organisations. That’s why I was very curious to find out more about this training. One thing I learned was that you can involve patients at lots of different stages during the research, and not just before or after the study like I always thought.

When I told the principal trainer – Annemiek van Rensen – what I was doing, she instantly shot back: "Nic, there’s a better way to do that". That triggered me to get her to tell me more. Hopefully this will help me give my research approach even more structure. By working more with protocols, for instance, so that certain steps are always identical and therefore reproducible.

Another thing I really want to discuss with Annemiek is how I can build a good relationship with doctors, specialists and patient associations - Stichting Vlinderkind and Debra Nederland – so that we can all work together in harmony on questions that are relevant to patients and clinicians alike. So this training will definitely get a sequel!"

Source: PGOsupport