Patient centricity is all about being understood

Patient centricity is required in clinical research. Listen to why patients join our communities, how nurses receive our patients at sites, and why patient organizations cooperate with James Lind Institute on making it easy and safe for all patients to engage themselves in clinical research.

Patient stories on why they are members

Ayaba, 40 years old

Denmark

I’m a member of James Lind Institute’s Danish patient community because I would like to contribute to improve the research in medical treatment of chronic diseases, and also help by making the medical treatment more accessible and beneficial for the whole society. And I can also get a better understanding of my own health by participating in clinical trials.

Siggi, 71 years old

Denmark

By being a member, and participating in clinical trials, I hope to be an active part of expanding our knowledge in terms of medical treatment of chronic diseases. This should hopefully lead to better medical treatment for all. In my point of view, if you, as a citizen in our society, expect to receive good medical treatment through your entire life, you also have a moral obligation to give something back to medical system and help research development

Jane, 53 years old

England

I will recommend other people suffering from a chronic disease to participate in clinical trials and become a member of the British Research Panel (James Lind Institute’s patient community in the UK).. There’s no cost for participating in clinical trials, all expenses for transport are covered, you have a weekly health check and you may help other people suffering from MS or other diseases, by developing new and better medical treatment

Nurse’s stories on receiving pre-qualified patients from JLI

Ewa, research nurse

Odense University Hospital

The patient communities of James Lind Institutes, is actually a remarkably good idea. As research nurses we can really feel the motivation and drive of these patients. They really want to make a difference. And their voluntary participation makes me a very happy nurse.

Elsebeth, Research Nurse

Rigshospitalet

James Lind Institute’s patient communities are brilliant, because it’s based on volunteering and commitment of people who want to participate in research. When I call the volunteer patients, the majority are more than happy to contribute.

Katja, Research Nurse

Bispebjerg Hospital

I did not expect just how fruitful our collaboration with James Lind Institute would be in finding patients with chronic cough for our research project. But I had a really positive experience, especially since we met our target in reaching enough randomized patients. Everything went quickly and smooth, and last but not least, we were in close contact with their research nurse.

Patient organisations' stories on fighting for patients’ rights in clinical trials.

Charlotte Lindgaard Nielsen, head of The Colitis & Crohn’s Association in Denmark

We know that our members want even better treatments for their various bowel ailments. This can only happen through research, and that’s why we are partnering with James Lind Institute to increase the focus on research participation. We believe that this collaboration will put the need for research in this area higher on the agenda.
Research projects and clinical studies are risking cancellation, because researchers and patients have difficulty finding each other. That’s why we hope that this partnership with James Lind Institute will help articulate the need for research participation.

Lisbeth Søbæk Hansen, head of The Lung Cancer Association in Denmark

I was surprised to see just how eager our members were to sign up for participation in clinical research. It was hard to keep up with all their inquiries. For us it’s all about improving treatment and conditions for lung cancer patients. That is why a collaboration with James Lind Institute makes incredibly good sense to us.

Lone McCollaugh, head of The Liver Association in Denmark

The Danish Liver Association supports the work that James Lind Institute is doing because we — and the other patient associations — feel that there is great willingness in patients to participate in research projects.

About us

James Lind Institute is an international patient organisation founded in 2011. It facilitates research focused patient communities in Europe, guiding patients in their clinical trial engagements.

Copyright 2019 - James Lind Institute