marinanoordegraaf

30th of April 2020 

Bridging patient experiences and research

This article by Wybo Vons appeared in the PGOSupport newsletter in Dutch and has been reproduced on this weblog and translated into English (with a touch of Dutch ;-)) with permission.

Patients provide indispensable input to scientific research that is necessary for the development of new medicines. To train patient representatives to become equal discussion partners of researchers, the Dutch EUPATI training (European Patient’s Academy on Therapeutic Innovation) was launched at the end of 2019. Participants not only learn how drug research works. They are also trained in how to effectively use their own experience and expertise in each phase of the drug design process. Marina Noordegraaf and Rob Hagen each tell from their own perspective how they view this new program.

Two years ago, Marina Noordegraaf receives bad news. She has to learn to live with Parkinson’s disease. Since then, that condition has had an increasing impact on her functioning. Yet she does not let herself be taken aback by it.

Detours

“Besides the visible motor symptoms, I especially have trouble switching attention,” she says. “I manage in one-to-one contact. But in groups, I have difficulty interacting. So parties are not for me anymore. This makes me limited socially. Which is sad. But I am always on the outlook for detours because I know – to speak with the words of Jules Deelder – that the possibilities within the limits are as unlimited as the possibilities outside the limits.

I am always on the outlook for detours because I know that the possibilities within the limits are as unlimited as the possibilities outside the limits | Marina Noordegraaf, patient researcher at the Dutch Parkinson’s Foundation

The Dutch Parkinson’s Foundation

As soon as Marina registers with the Dutch Parkinson’s Foundation, she applies as a patient researcher. In this way, she can not only use her academic background in chemistry and her work experiences but also continue to appeal to a healthy part of herself. “I’m in a hurry because it isn’t getting any better,” she says with a laugh. “And if I can contribute to the prevention of Parkinson’s with my knowledge and talents, at least it is not for nothing. You really don’t want anyone to have this condition.”
For the past 2 years, Marina has devoured the scientific literature about her illness. Among other things, she studies the effect of pesticides on the development of Parkinson’s. It is no coincidence that this is what interests her. During her PhD research – half a lifetime ago – she was exposed to pesticides herself.

New role

In her new role as a patient representative, Marina has already had many conversations, both with medical specialists and with researchers. As a result, she knows that it is not self-evident that the specific knowledge of patients is taken seriously by professionals.”While therein lies enormous potential for innovation,” she emphasizes.

It is not self-evident that the specific knowledge of patients is taken seriously by professionals. While therein lies an enormous potential for innovation | Marina Noordegraaf

Rob Hagen does take Marina’s qualities seriously right away. As chairman of the patient researchers working group at the Dutch Parkinson’s Foundation, he asks her to contribute to the kick-off meeting of EUPATI NL.

“I myself followed the EUPATI training two years ago in Madrid,” Rob recalls. “Due to my background in medical biology, movement sciences, and epidemiology, I already had a lot of relevant knowledge. That’s why I quickly got through that training. Afterwards I remained involved as a fellow, and in recent years I have worked on the Dutch version of this program.”

Soft skills

EUPATI NL consists of 5 online modules, in which a certain phase of drug research takes the stage. In between, several meetings are planned in which the participants visit a research institute or are trained in soft skills.

“How do you provide effective feedback, for example? When is it better to say nothing instead? And how do you question researchers in a critical and constructive way? “Rob sums up. “These are all important skills you need as patient representatives to build a relationship of trust with researchers.”

Versatile

“During the training, the participants develop numerous competencies, which they can use widely as an active volunteer at their patient organization”, Rob continues. In recent years, he has noticed how the extra knowledge he gained comes in handy when guiding various research projects. “From clinical trials for drug development, to research into the effectiveness of the use of specialized Parkinson’s nurses; on behalf of the Dutch Parkinson’s Association, I am involved in very different studies. And thanks to everything I learned at EUPATI, I can now really talk to researchers.”

Thanks to everything I learned at EUPATI at the time, I can now really talk to researchers | Rob Hagen, EUPATI fellow, and chairman of the working group of patient researchers at the Dutch Parkinson’s Association

Thinking critically along

“It strikes me that researchers often take an open and even vulnerable position, even about things that they are in doubt about. We sometimes discuss issues in detail. But without me sitting on the researcher’s chair. After all, the point of being a patient representative is to add experiences and insights that researchers lack.”

“First of all very practical: to what extent can you burden patients with participating in clinical trials, especially if they have little energy? But also ethically: is there, for example, an independent doctor involved in the research as prescribed? And is that doctor really independent? And of course in terms of content: for example, with suggestions to include certain variables in the study that are particularly relevant for patients. This way you can think critically from a patient perspective at every stage of the research – from design to implementation.”

At every stage of the research – from design to implementation – you can think along critically from a patient perspective | Rob Hagen

“Even if the study results are known, you can point out to the researcher how important it is that these results are also fed back to the patients who participated in the study. That is often forgotten. In addition, patients who participated in a double-blind study would, of course, like to know whether they received the placebo or the experimental product. In the EUPATI training, you will learn to bring in all these elements.”

An exercise in patience

During the EUPATI training, participants are trained in building bridges between two worlds that are sometimes far apart: the academic and pharmaceutical world of researchers who work within strict scientific frameworks, and the world of patients who have a direct interest in the development of better medicines and new treatment methods as soon as possible.
Patient representatives engaged in scientific research should, according to Rob, learn to exercise patience no matter how understandable and palpable their sense of urgency and the resulting haste may be.

Patients often expect research to be completed within a few months | Rob Hagen

“Patients often expect research to be completed within a few months. They do not realize that researchers usually focus on answering a research question very precisely and in detail. As a result, research processes and drug development often take years.”

A different route

Marina is less patient. Instead of bridging the gap within the framework, she opts for a different route, the route of so-called open science: sharing the research process, progress and (interim) results, such as research proposals, methods, data, preprints and the articles themselves – as open, quick and understandable as possible. “In this way, the knowledge will earlier benefit the patients for whom the research is ultimately intended,” she emphasizes.

“In open science, patients play a much larger role. They help to determine the research agenda, provide input for the research design, are patient reviewers of scientific articles, or contribute to translating the knowledge in order to bring science closer. “

Open science is only possible if the required knowledge and research results are made available to patients. Unfortunately, that still happens far too little | Marina Noordegraaf

Barriers

“This is only possible if the required knowledge and research results are made available to patients. Unfortunately, that still happens far too little. For example, the current model of drug research with patents and the withholding of research data hampers the necessary innovation. Moreover, this is extremely frustrating for me as a patient. While searching for scientific literature about my condition, I keep coming across paywalls. In short, by withholding information you keep the people for whom you are doing the research – patients – small.”

Marina likes to enter into a dialogue with researchers about the possibilities of making their research more open. “Usually it is not a question of unwillingness, but researchers don’t really see how things can be done differently. But the current corona pandemic shows that things can be done differently. That open science is possible and that knowledge is shared to develop new vaccines. I would, therefore, be delighted if open science was also included in the EUPATI NL training.”

Hidden potential

“Ultimately it is about patients and researchers really talking to each other. Only then can we achieve surprising results,” Rob adds. “PGO Support therefore also offers training to researchers in which they learn to use the experience of patients.” According to Rob, researchers should consider whether they are really willing to use patients’ experiences and insights as a source of knowledge.

Ultimately it is about patients and researchers really talking to each other. Only then can we achieve surprising results | Rob Hagen

“I sometimes see a derogatory attitude with them. For example, because they put patients away,” he says. “At the very end of the ride, they are given a footnote in an article. So there is still much that can and must improve.”

Here Rob and Marina find each other. Patients are a unique source of knowledge and talents. “That is why it is and remains of great importance that their “healthy innovation potential ” is fully utilized!”

PS BY SPARKS

IN THE SPOTLIGHT

The interview above shows that it is not self-evident that the gap between patient and researcher is bridged. Both parties must build towards synergy.

I am lucky to know a Parkinson’s researcher who knows how to build the bridge very well. Who comes more than half way and takes me even more seriously than I sometimes take myself:

Dr. Ingrid Sturkenboom.

In 2016 she obtained her PhD on “Occupational therapy for people with Parkinson’s disease” and currently works as an occupational therapist and post-doc researcher at RadboudUMC.

Some things I’m grateful for:

* From the beginning that I started blogging, she encouraged me by saying something positive;
* She takes my role as a patient researcher at JOBGRIP very seriously. For example, I was able to help develop the handouts for the group training and she lets me and my colleague patient researcher be observers in the in-depth interviews with which the training is evaluated;
* Ingrid has – together with Dr. Esther Steultjens – supported me and my Parkinson’s colleague Edwin Barentsen in drawing up a subsidy application where I will conduct the research myself (if the subsidy is awarded, of course, we will hear that in June 2020 ..). The research focuses on the detours that patients and their partners (can) use to circumvent cognitive obstacles.

Ingrid is an example of a researcher who doesn’t just say that the patient is centric to research. She really shows it in her behavior. Thank you for that!

Sparks

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