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Active patient engagement in research


Both articles appeared in ‘Supporter #8, April 2021’. Supporter is the magazine of PGOsupport. Want to know more about patient participation? PGOsupport will be happy to advise you. Use the contact form

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Researcher and patient partner working as a duo

Working in duos as equals. What does that demand from researchers and patient representatives? Safae Hamkour and Wilma Wissink tell how they complement and keep each other sharp.

You can throw everything on the table with patients

Suffering from pain and tiredness. Or dry eyes and a dry mouth, without the doctor being able to find a clear cause. Patients with Sjögren syndrome know this scenario all too well. Some of their complaints are measurable in disease activity scores, but others are not.

PhD research

In her PhD study at UMC Utrecht Safae Hamkour is looking specifically at the effectiveness of a promising combination therapy. Does that therapy have the desired effect, and not just on reducing the clinical disease activity, but also on those other less measurable complaints afflicting Sjögren patients?
With her input as a patient representative, Wilma Wissink is helping to piece together this tricky puzzle. She gives Safae her insights, both on request and spontaneously. Vice versa Safae feels free to press Wilma on specific details.

Wilma, when did you discover that you have Sjögren syndrome?

"Finding that out is a long journey for many patients, because the complaints are so diffuse. That applied to me too. I was examined several times. But the diagnosis was only made when I was 35. I was pregnant at the time and was no longer able to use my hands. Multiple small salivary glands in my lip were inflamed, and that clue led to the diagnosis." 

Wilma Wissink
Wilma Wissink

What things do you run up against day to day?

"I often have a very dry mouth and my eyes are also always dry, which influences my speech and sight. Eye drops help a little, but that only fights the symptoms. My joints also trouble me and I have an underactive thyroid. And I always feel a bit fluey; which is a nuisance now – because you never know whether it might be corona. Everyone with this syndrome is confronted with such an accumulation of diverse disorders."

You are currently working as a patient partner with Safae. Do you also take part in her research?

"No, that would muddy things I think. The basic idea is for me to think from a certain distance about such questions as: what would a patient think about this, what might disturb them, and what information do they need? That is really a different role from being a clinical trial participant, who is expected to indicate the effect of the combination therapy being studied."

Safae, what do you expect from your cooperation with Wilma?

"I hope above all that Wilma will gradually start coming up with initiatives, ideas and suggestions of her own, without me explicitly prompting her. So that we can spar with each other about the study at a level where each of us can take the lead at different times."

Safae Hamkour
Safae Hamkour

And she can shout out whatever she likes?

"Certainly, I look forward to being surprised! Wilma has taken part in medicine research before; she knows the ropes as a patient; and has experience with doing research into the bargain.
With that expertise she can provide me with input at various crucial stages. Such as when recruiting patients for this research and giving them information. Wilma’s contribution can be crucial in helping us to put across the research idea to the patient."

I look forward to being surprised by Wilma’s insights

Wilma, how do you see your role?

"I see myself hopping from place to place in the well-known Participation Circle. Sometimes I contribute as a complete equal. Such as when we get together to think about sensible follow-up steps. But other times Safae is in the driving seat, with me relying on her input in order to assess that from the patient’s perspective.
Only recently, for instance, I provided a critical pair of eyes for the formulation of the letter that is sent to potential participants. Obviously, the formal format and mandatory passages of that letter are things I cannot change.
But I do try to read such a letter as a patient. Is the information unambiguous and understandable for the patient? And is it clear that they are not only making a contribution, but also getting something back? That’s the kind of thing I pay attention to."

Safae, are you not worried that Wilma might make suggestions you cannot use?

"One thing I learned from my clinical supervisors is that there’s nothing you cannot throw on the table with patients. For instance when you have doubts about your attainment targets when setting up your study. Or when you want to add certain aspects. You might find out later that something is not achievable, but that doesn’t matter; as long as you keep managing each other’s expectations."

How do you experience your collaboration?

"So far this duo set-up has suited me fine. Wilma is really ‘marinated’ in my study. That means I can put all sorts of different questions to her, such as: can I request participants to fill in a lengthy nutrition questionnaire every day, or is that asking too much from them?
When I was drawing up the patient letter, Wilma gave me the tip to not just mention the possible side-effects, but also where patients can go if any of these side-effects occur. She keeps me sharp with suggestions like that."

Wilma, some researchers work with two patient partners to be assured of continuous input. You are on your own. How does that feel?

"I think that in our case working together as a duo is the most effective approach. The line of communication is short and we each invest in this collaboration in our own way. If there were an extra patient partner, I would be more inclined to divide the tasks. That would make our contact less intensive.
In this duo set-up, however, I have to make extra sure that I represent the broad perspective of the entire Sjögren patient group. That’s why I keep close track of the issues that the various Sjögren patient associations share online."

Wilma is really 'marinated' in my study.

You come across as an ideal couple; but you are also taking part in a peer coaching programme of PGOsupport. Safae, how does that help you?

"I find it valuable to hear the experiences of other duos; that helps us reflect on our own interaction. It’s almost therapeutic at times. Some things you recognise, others compel you to think about how we work together and to solve any problems we see.
Fortunately, our characters go really well together. If anything is bothering me, I can simply tell Wilma, and the same applies vice versa. When we started, she asked me straight out what I expected from her. That made it easy for me to speak my mind. Open communication is extremely important!"

Wilma, why did you ask that question?

"I wanted us both to have a clear idea what we were doing from the outset, and also what Safae could expect from me. Shortly after we started working together I emailed Safae asking her: are there any developments? We were in the middle of the corona pandemic and I hadn’t heard from her for a while. I was a bit nervous about doing that. But thankfully Safae sent me a very open and honest reply."

Wilma, what is your golden tip for duos?

"What matters most is that you stay curious and interested in each other. Keep putting yourself in the other’s shoes, and see what you run up against together. That mutual involvement is essential. At the same time you also have to continue looking from a distance at where the path you are on together is leading to. Because you never know that in advance."

Safae, what can you add to that for researchers?

"Building an enduring collaboration takes staying power. Be clear and honest, and mention anything you are uncertain about. At the same time, I feel responsible for making sure Wilma’s boundaries are respected. I check that regularly. But the most important thing of all, of course, is: try things out together and discuss the outcomes. Keep playing ping pong!"

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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!"

Patient Participation Course for researchers
Set-up: one-day customised training, on location or online; the training focuses on theoretical and practical aspects of working with patient representatives in a research setting; focusing on e.g. the Kickstarter and Participation Matrix; intro videos and interactive methods for testing your own ideas against a patient researcher’s perspective.
Trainers: Annemiek van Rensen, an experienced scientific researcher with over 10 years’ experience as adviser/trainer for patient participation in research and medicine development; and Rob Hagen, former chairman of the Patient Participation Working Group with the Parkinson Association and patient expert. Average participant rating: 8.1.

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