The importance of the patient voice in health leadership

Members from Cohort 3 discuss the benefits of hearing from patient representatives

Do health leaders really listen to patients? Are patients really at the centre of decision-making in health? These may, on the surface, appear to be redundant questions – of course, patients are at the heart of health care and are listened to. But the real-life patient experience can be very different.

Judith Safford, a patient expert and advocate, based in Switzerland, is a member of Sciana Cohort 3. Her experience as a patient over 30 years inspired her to work as a patient representative and campaign for the patient voice to be heard. She believes that a health care system in which the patient voice is heard at all levels is one that provides better care.

“As a patient with a long and complicated medical history of chronic diseases, I have found on several occasions that if I am not listened to, or not taken seriously, errors and oversights can and have occurred, which affected my health dramatically.”

Coming to Sciana as a patient expert rather than a health expert, Safford offered a perspective that really challenged the group’s thinking as a whole. Fellow Cohort 3 member Oliver Gröne explained what the impact was of having this patient perspective in the Sciana experience: “The group was very diverse in terms of education, background and motivation, but perhaps what I found most inspiring was working with a patient representative. I found the discussions from that perspective, the differences that come from that perspective, stimulating and really enriching.

“It made me realise that once there is [a] patient or patient representative in the room, the whole conversation changes. It’s very easy to say ‘let’s involve a patient’ and send them a paper or do a focus group. And then, from a safe distance, decide which aspects we refer to. But once there is a patient in the room, in all phases of the project, it really changes the dynamics. During Sciana, I think it really grounded us many times in the discussions.”

Safford’s experience in Sciana was also enlightening for herself: “I was intimidated to start with, being surrounded by all these health leaders. But it ended up really helping my self-confidence.

“I’ve seen some exemplary leadership in this group, in the way people present themselves and manage things and explain things. I’ve learned so much, and it has helped me to adapt. Sciana cultivates collaborative thinking, and I came to see that there are many different approaches.”

Patient representatives will continue to be part of Sciana, and Safford’s experience demonstrates the importance of this. She gave an example: “There was a discussion in a webinar about what to do about patients’ data. And I said that there’s just one thing that you have to remember: that patients’ data ultimately belongs to the patients. People had been talking about data and forgetting that.

“I guess that would be my main function – to keep bringing it back to the patient. This is what health care is about. People.”