Growing collaborations with patient organisations

At James Lind Institute we’ve been steadily building our outreach to a number of patient organisations both in Denmark and the UK. We’ve gone into 5 new collaborations with PO’s in the last six months alone.

The PO’s cover a wide array of illnesses, ranging from diabetes, lung cancer and Cardiac Syndrome X. And from what we’ve already gained and learnt in new partnerships, we see so much reason to keep on. And thankfully, the feeling is mutual.

An example of such a collaboration between a PO and James Lind Institute was displayed when an international research was in the search for patients to participate in a study, where the researches wanted to know more about lung patients in order to better their everyday life.

But even we weren’t able to select all participants needed from our pool of over 18.000 Danish patients in our Danish patient community, Forskningspanelet. That’s why we got together with Patientforeningen Lungekræft, the Danish patient organisation for lung cancer.

And then things got rolling. Both parties were looking to make things better, to strengthen research in lung cancer and its ramifications.

“I was surprised to see just how eager our members were to sign up. It was hard to keep up with all their inquiries because they really wanted to participate and were very enthusiastic about the project,” says Lisbeth Søbæk Hansen, head of Patientforeningen Lungekræft.

Working together simply made sense, and in no time the study was ready to proceed.

“Danish lung cancer patients are now able to safely enter studies, and in the proces ensuring that this particular international study could press ahead instead of being shut down. Because of our getting together with Patientforeningen Lungekræft, researchers are now able to focus on finding ways to making living with lung cancer more bearable for patients,” says Henrik Vincentz, CEO and founder of James Lind Institute.

And this is the thing: If we really want to ease the life of patients and to enable researchers to find tomorrows cures and new breakthroughs, we’ve got to get together.

That’s why we keep going forward, talking to PO’s, currently in Denmark and the UK, getting to know them better, looking for new ways to collaborate.