Some Patient Groups are more ready than others to participate in research
Updated: May 2, 2019
This is the first of a series of four videos where I interview Tamsin Rose, a European Health Policy Consultant on the subject of patient engagement. The interview gives practical tips for working with patient groups in research as some groups are more able and willing to participate than others.
Rare disease and established groups often show best practice.
Getting a representative sample of patients for research.
Use the embedded experience of patient groups as part of a capacity building exercise for newer groups or if you are entering a new disease area.
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The text version is below.
Nick Hicks Are some patient groups, in your experience, more ready than others?
Tamsin Rose Yes. Unfortunately because of the situation they're in, you find that rare disease patients are usually very well informed, because they've spent seven or sometimes 10 years, bouncing around health care systems, going from one specialty to another and trying to get a diagnosis. So by default, know health systems. They know medications a lot better than any other organizations. So many rare disease groups are quite well developed, and informed.
Tamsin Rose There are others that might have a chronic condition, so they're living with something for 20-30 years. Again, because of the timing, they also have in their patient networks people with the skills that can pass from older patients to younger patients who can share terminology and skills and bring them up to date. It's the new patient groups that find it the hardest.
Nick Hicks When you say new patient group, what do you mean?
Tamsin Rose So, the ones that are just at the stage of finding out who are we, what do we have in common? Where do we fit in the broader scheme and how do we work? Patient groups are mostly run by volunteers in their spare time from somebody's back bedroom and somebody who knows a little bit about Facebook might create a web page for them. So really, their organizational strength, is very limited, especially in the early stages.
Nick Hicks So, how can pharma bridge this capacity gap?
Tamsin Rose Well I think it's really important for Pharma to understand that what they're doing is they're investing relationships. That it isn't as simple as saying, "We need a patient or a patient group to just sit on this board to discuss this drug." That's not going to work. What you need to do is to say we are investing in the long term capacity of patient communities to understand the medical process, to understand the drug development process. And then to be able to provide meaningful input over a long term.
Tamsin Rose So increasingly we need to have experience of patients and not just what was the side effect of this particular pill, but what else is happening in their lives. How else might this be effecting the experience? So this is why Pharma needs to invest in those relationships with patient groups. We won't get the kinds of large amounts of data needed, to get accurate medical breakthroughs without those relationships. For patient organizations one of the great challenges is to ensure that they are more than the collection of experiences of the individuals who happen to be in the room.
Tamsin Rose Obviously, as a patient, what you've got to share is your lived experience. And as a patient group, the more they share experiences among them, the more you can get a sense of commonalities that people are experiencing. In drug development and others, you are asking to project the experience of a few to a much broader audience. And you need a certain level of organization maturity to be able to have mechanisms for someone that is sitting in a room, giving input to be able to say, "Well, I have X people behind me and I can survey them, and I can ask for experience. I can draw on our collective roots to give you something that's a little bit more representative than just me and the five people on speed dial in my phone."
Tamsin Rose So, this is the great challenge. Patient organizations have incredible legitimacy and authenticity and they are the only ones with a window into their experience. But, we have to get a balance with understanding. Is this representative of the broader set of patients with this condition?
Nick Hicks It's very much that the bigger the patient group, almost, the less representative they are of the overall patient voice. They may be more professional, but it's the smaller groups who have the more authentic patient voices. It's a bit of a dilemma.
Tamsin Rose I'm not sure I would say it's about them being more authentic. I think it's more direct. If you've got a small patient organization where you've got a board of seven people and you've got 500 members, the relationship between their members and the board is very immediate. You've got direct feed through. When you've got a network, where you've got member national organizations in 30 countries around the world, and they have several levels of management, so they've got national managers, and then they've got a European board and such. You've got a much longer chain of people between individual patient and the final top representatives.