• Nick Hicks

Full, rather than tokenistic engagement

Updated: May 3, 2019

This third part of the interview with European HealthCare Policy Consultant Tamsin Rose,  we tackle the subject of how the patient voice is used and viewed in research.  There’s still a way to go as we find out as it is still quite tokenstic. 

Nick Hicks: How equal do you think patients are being treated at the moment, in terms of involvement in R and D?

Tamsin Rose: Honestly, I think at the moment it tends to be a bit tokenistic. I have been an evaluator for the European Commission on some of their scientific research programs, and I have been the only non-clinician in a group of four or five evaluators and the other evaluators are saying, "Oh, this is very a respected university. This is a very important coalition. Its reputation's amazing." And I said, "Yes, but if you look at the project, there is a actually very little input of the patients themselves." "Oh, it doesn't matter.

This clinician is very important." And bear in mind that academics and researchers are incentivized through their job, through their publications. The more their publication is cited, the more their value is. So, they're looking to be making their name in areas that will get publication, not from the kind of slow, longterm relationship-building and partnership with a patient.

Tamsin Rose: So, on the one hand, it's great opening all these doors for patients. On the other hand, we also have to change the incentives for the other people around the table before the behaviors really changes.

Nick Hicks: So, there's still work to do.

Tamsin Rose:Yes, and I think if you look honestly at some of the tables that are there, the patient is seen as the guest at the table, rather than having a right to be at the table.

Nick Hicks: I think that's probably a very good place to stop.

Nick Hicks: Tamsin, thank you very much indeed. It's been a fascinating conversation. And if people need to contact you they can contact you through your email at the end of the video. Is that right?

Tamsin Rose: Yes. They're all welcome to contact me there.

Nick Hicks: Thanks very much.

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