Patient engagement: how end-users can help you develop better medical products

In the life sciences and healthcare environment, involvement of end-users is commonly called ‘Patient Engagement’. In this session, speakers shared their experiences, each from their own perspective, with patient engagement at different stages in developing a medical product: from research & development to bringing a product to market.

"Health care is for patients, not the other way around", Veronica van Nederveen

Veronica Nederveen shared her experiences from the Dutch Clinical Research Foundation, that illustrate how discussions of researchers and end-users, as equals, can benefit all parties involved. She said: “Patients and patient representatives are experts in living with a disease or condition. Their expertise should be acknowledged as such and as equal in value to the technical expertise other stakeholders bring in.”

Nathalie Bere highlighted how the European Medicines Agency (EMA) has worked with patients and consumers over the last decade to ensure engagement evolved and expanded through mutual learnings. Nathalie explained: “We went from: ‘Why is there a patient in my meeting?’ to ‘Why is there no patient in my meeting?’, if we failed to find one. It is important to realize that it is of mutual interest. It is also interesting for patients to learn how risks and benefits are balanced by the EMA when making a decision.”

Elizabeth Vroom from the Duchenne Parent Project illustrated that patient organizations can provide input to Health Technology Assessments and reimbursement decisions. What would she advice a basic researcher to engage the patients?  Elizabeth: “Patient engagement is not difficult. Eric Hoffmann* is a good example. He sent all his PhD students to summer camp with people that have Duchenne, just to speak to them.”

The effect of engaging patients may not always be directly visible, but it might guide the research on the long term. "At the moment we still go from bench to bedside, and then back to the bench. The idea is to change that and to start with the patient, go to the bench, and then back to the patient.”

A common theme throughout the presentations and discussions was that in the end, it's all about stimulating a good dialogue - be it on a research question, study endpoints or a treatment decision. It is important to engage different stakeholders and end-users to speak a similar language, and to approach each other with an open mind. Only this way can we improve healthcare together. At the same time, all speakers emphasized not to make patient engagement a scientific exercise, but to start with the opportunities you have, and build it up from there.

Lygature is actively working on patient engagement within multiple research consortia. Please contact Irene Kanter-Schlifke if you’d like to discuss this topic further.   

*Eric Hoffmann Associate Dean for Research in the School of Pharmacy and Pharmaceutical Sciences at Binghamton University