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A win-win situation for both sides - how researchers and patients work together

Helga Rohra, Co-Chair of the Patient Advisory Board at the DZNE, and Pippa Powell, Director of the European Lung Foundation and member of the Scientific Advisory Board at the DZL, talk about their practical experiences.

As Director of the European Lung Foundation (ELF), Dr. Pippa Powell has been working at the interface between scientists and patients for 22 years. Trained as a biomedical scientist, she recognized at an early stage how important it is to involve patients in the research and care process. Helga Rohra was diagnosed with Lewy Body Dementia in 2007. She has been involved in the European Working Group of People with Dementia since 2012. Together with Prof. Martina Roes, site spokesperson at the German Center for Neurodegenerative Diseases (DZNE), she was significantly involved in setting up the DZNE Patient Advisory Board. We spoke with both of them about their experiences.

"For a long time, it was very difficult to convince healthcare professionals to include the patient perspective," says Pippa Powell. "That has changed fundamentally. Now, in many of our meetings, scientists ask about patients who can share their experiences." The presence of patients helps researchers tailor their work to their needs and priorities. Pippa Powell also represents this important perspective on the Scientific Advisory Board of the German Center for Lung Research (DZL), of which she has been a member since 2016. Patients often have slightly different priorities, for example, they are more concerned about their quality of life than the effect of a new treatment or drug on their disease. It is also important to them that new therapies and treatments can be implemented in their everyday lives.

"We can no longer maintain the separation between patients and professionals, it has to be a partnership."
Pippa Powell

"There has been a major paradigm shift," says the British biomedical scientist. "You can no longer provide health care without the involvement of the patient. With the digitalization of care, we expect them to take more and more control of themselves and their condition. So we can no longer maintain the separation between patients and professionals, it has to be a partnership."

This requires informed patients who have access to scientific knowledge in an understandable format. To this end, the ELF has developed an online course, the European Patient Ambassador Program (EPAP), which is also available in German with the support of the DZL. The course is suitable for people with any disease. It provides the skills and background knowledge needed to represent yourself and others to health professionals, policy makers, researchers and the media.

"Experience is what makes us experts"

"We patients are experts by experience, which is a valuable resource," says Helga Rohra, co-chair of the Patient Advisory Board at the DZNE. "That's why it's mutually beneficial for doctors and researchers to work with us." She believes that it is not so much the patients who need to be prepared to participate in research, but rather the researchers who need to learn how to interact and connect with patients. The relationship level is particularly important. Martina Roes confirms this: "For collaboration to be successful, especially people who have not worked in science before must gain trust in scientists."

"It's a mutual benefit when doctors and researchers work with us."
Helga Rohra

Of course, there is an inhibition threshold when it comes to getting involved in research; many people don't have the confidence, says Helga Rohra. But passion for the subject and commitment are more important than professional preparation. And in her experience, once you get involved, you stay involved. Because you can make a difference, become more confident in dealing with your own diagnosis, and benefit from the exchange with other patients.

Patient participation has many facets

In lung research, as in neurodegenerative diseases, there are already many ways for patients to get involved, especially at the European level. "We have people who sit on important committees, but also patients who organize online conferences or just want to be there and listen," says Pippa Powell. At the highest level are the Clinical Research Collaborations (CRCs) of the European Respiratory Society. These bring together healthcare scientists, patients, and industry. She uses an example from the coronavirus pandemic to illustrate the impact on patients. A group of asthma patients wanted to know how COVID-19 affected their asthma. For nine months, a clinical research collaboration focused on collecting data from registries in different countries and conducting surveys on this topic.

Patients as co-researchers

When the DZNE Patient Advisory Board was founded five years ago, it was a completely new concept in the field of neurodegenerative diseases in Germany. "At that time, it was very important for us to benefit from Helga Rohra's experience at the European level and to discuss with her what it means to actively involve people with dementia in research," says Martina Roes.

The DZNE Patient Advisory Board meets regularly to discuss a variety of topics. The board also supports DZNE funding applications. For example, the Patient Advisory Board supported DZNE's application for the TaNDem project with a letter of support. They explained why this research is so important for patients. This was very well received by the BMBF. TaNDem stands for Translational Network for Dementia Care Research. Its goal is to work together to improve the care of people with dementia and provide optimal support for their relatives.

"Patients must speak for themselves, that is the future."
Helga Rohra

Helga Rohra has also been involved in two DZNE research projects as a co-researcher and is also listed as an applicant. "This term 'co-researcher' is future-oriented, it expresses the fact that you are on an equal footing with the scientists and can really make a difference," says Helga Rohra. If patients become more aware of their own abilities and doctors and researchers open up to them, the result will be an unbeatable team. Patients must speak for themselves, that's where the future lies.

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