Introducing new initiative: Nurse Notes

As part of our effort to bridge the gap between patients and researchers in clinical trials, James Lind Institute launches new feedback initiative for patients.

In or out. That is often the final message a patient receives, after having spent several weeks undergoing countless tests, in-depth conversations and various blood-samples with the hope of participating in a clinical trial.

If the patient is screened out, the communication between the research team and the patient ends. But what good is testing and having in-depth conversations with thousands of patients to find a select few participants, if there is no feedback once the study is through? After all the patients have put their time and effort into the project, hoping to be a part of the clinical trial.

Not good enough, according to Henrik Vincentz, founder of James Lind Institute. That is why James Lind Institute is launching a new patient outreach and feedback programme: Nurse Notes.

“We know for a fact that patients are eager to give back to science, and that’s why we want to help researchers give better feedback to patients. When a chronically ill person shares their personal health issues with our research nurses or with site personnel, it is only fair that we aim to be as open about the findings and pass on as much knowledge as possible,” Henrik Vincentz explains, adding:

“Patients have a thirst for knowledge regarding their diagnosis and appreciate being taken seriously. And I believe that sites and Pharma will benefit from better feedback too.”

Enthusiastic and interested patients

Often the lack of feedback comes from a shift in focus or lack of time. Maybe the project did not end in a breakthrough in the treatment of the particular diagnosis, maybe there is not yet a product or even a clear result. Still, there is something to learn, and therefore something to pass on.

Birgit Hauggaard-Nielsen is the head project nurse of Nurse Notes at James Lind Institute. As an experienced research nurse with more than 20 years in the field, she has talked to thousands of patients:

“Patients are open and honest with me already when we are screening for participants for studies. They are really enthusiastic about the clinical trials and it makes sense to me to extend their trust and enthusiasm to giving them feedback too,” she says, continuing:

“We talk to so many people and get a good overview of a complex group of people. We are able to see the bigger picture and through Nurse Notes, we help patients to get a better understanding of their symptoms and health,” says Birgit Hauggaard-Nielsen.

A small step on the road to patient centricity

Nurse Notes has been launched after James Lind Institute’s work with the clinical trial for chronic cough patients, where more than 500 patients were screened over the telephone. The content of these conversations was analyzed and afterwards written into an e-mail with some of the learnings from the research nurses combined with the best advice for patients suffering from symptoms related to chronic cough.

Moving forward, the Nurse Notes initiative is going to be a standard procedure every time James Lind Institute works with finding patients for a clinical trial.

For Henrik Vincentz, this initiative is only a small step in the big process of making sure that the patients’ needs are in center focus, when working with clinical trials:

“We need to start a conversation about how we practice patient centricity in our work with clinical trials. How do we make sure that patient needs are in the center of what we do? The Nurse Notes initiative is a small step in that direction.”