• Nick Hicks

Patient Group Capacity – the biggest challenge facing Pharma

Updated: May 2, 2019


This is the second interview in the If Medicines Could Talk © series where I interview Tamsin Rose, a European Health Policy Consultant on the subject of patient engagement. 


Strategic considerations


  1. Following a capacity building approach is a very successful and compliant way of working with patient groups and advocates and can establish institutional trust very quickly.

  2. Use in the early stages when building the partnership and focus on areas of common, shared concerns.

  3. Understanding the specifics of the patient learning curve means that engagement projects start quicker and proceed more smoothly.


Nick Hicks: What's been your experience of patient involvement in R and D?


Tamsin Rose: Well I think the first thing to understand is that for patient groups, there's a huge learning curve.


Tamsin Rose: In the beginning, when patient groups come together, they come together for mutual support, to understand each other's experiences, to get good advice. Then, as they get a bit stronger and a bit more mature, they start to think, "Well how can we influence the health systems we work in? How do we make sure other families have an easier ride?" And most of the time, their attention, quite legitimately, is focused on diagnostics and treatment options.


Tamsin Rose: To then move further and say, "Well actually, we need to be moving upstream and looking at early development of drugs," that's a whole new area for them, and it means they've got to learn about labs. They've got to learn about how is research done? What is a molecule, and how is a molecule different from a drug? How does doses work? What are numbers needed to treat, and other technical terms? So it's a very different world, then, to enter, and it's often quite late in their own organizational development. They start thinking that that's the area they need to go in.


Tamsin Rose: All the stakeholders are clear that the future of health is patient centered, patient led, patient driven. That's the good news. The bad news is that that means that everyone is suddenly looking for patients, to get them in everywhere. But patient groups aren't all at the same stage of readiness, and they need time to develop their own skills, their own strength, their own capacity. Their own organizational tools. They've got to have their own ways of representing, listening to their audience, bringing them on board.

Tamsin Rose: So if you go into them too early, when they don't have that maturity, and that organizational resilience, and capacity, and say, "hey, come in and let's talk early stage development drugs," they're just not ready. And in many ways, you're diverting them from what they really need to do, which is strengthen the organization. So if it's got roots that go down, then they'll be able to draw from that, and the quality of what they can offer is just so much better.


Nick Hicks: What I'm hearing, that there is a big skills gap, or an expectation gap between what we want them to do, and what they can actually achieve.


Tamsin Rose: Yes. Because there's such a focus now on patient engagement, it means that theoretically all doors are open. And this is amazing, that we've got to this point in patient engagement. On the other hand, the patient organizations are not all ready to be able to move in and take all of those seats at the table, and to be able to engage in a meaningful way. So yes, they need a bit of space, they need a bit of time, they need some training, they need the resources and the skills to take advantage of those opportunities.


Watch the first in the series here Some Patient Groups Are more Ready Than Others


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