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OVIDcast by OVID Health, a global healthcare communications consultancy, explores current issues in the health and life sciences sector.
In each series, we explore a new topic, speaking to prominent figures within the healthcare landscape.
[00:00:00] Jack Fleming: Hello and welcome to OVIDcast. Here at OVIDHealth, we are committed to enabling and inspiring healthy lives through the power of communications. In this series, we'll be exploring the essential role of partnerships between patient groups and the life sciences industry and asking how the sector can forge stronger partnerships which deliver better healthcare for patients.
In this episode, Rachel Stewart, OVID Health Deputy Head of Patient Partnerships, and John James, CEO of the Sickle Cell Society and OVID Health Patient Partnership Index Judge, discuss innovation and sustainability in partnerships.
[00:00:43] Rachel Stewart: Hi, John, welcome back. You've spoken a lot about innovative partnerships, you talked about improvements in innovation and seeing kind more innovative approaches. What do you think are the benefits of adopting an innovative approach to your partnership.
[00:00:57] John James: Well, I think there are two immediate benefits that spring to mind, one is the fact that it's new and shiny and hasn't been done before and brings about a degree of learning, both for the advocacy organisation and indeed industry. The other thing that I would pick up about innovation is how you can use other tools as part of that innovation. So I was struck to see, you know, some of the entries over the two years, using the arts, learning from other parts of the world and I think that the more innovation there is, the better.
[00:01:41] Rachel Stewart: Fantastic, thank you.
Another thing we've noticed that companies or partnerships struggle with when they're submitting to the Index is around measurement and kind of demonstrating the impact of their partnership. Do you have any advice for patient organisations and companies sort of setting up a partnership at the moment about how to measure the impact of that partnership? And not just in terms of kind of the outcomes at the end, but in terms of how they design the partnership and how they can monitor progress as they go along.
[00:02:18] John James: I do, the advice is that involve, involve, involve patients and families in that measurement at a really early stage, because I think the more input there is from patients and families, the more it helps to inform the design, the qualitative measures, the quantitative measures, and so forth. So I think involvement is an important characteristic of getting to impact and getting to good outcomes and I think listening is, because the listening point, Rachel, is about avoiding that, we think we know what we want to do, we just want you to help us get there and that's why one of the criteria in the Index is about co-creation and that's why that is so important.
[00:03:13] Rachel Stewart: One of the things we've found from the Index is that partnerships that are long term, not necessarily just a, you know, a six month project or like you say, perhaps something that's short term and kind of expected to deliver certain results within a short time frame, but it's those long term partnerships that are kind of looking further afield that tend to have more impact. Is that your experience of partnerships as well?
[00:03:40] John James: That's a very good point and, it is my experience. So the value of long term relationships is critical to, kind of enable sustainability in my view. Patient advocacy organisations sometimes fall into this revolving door of short term projects with industry that are just going round. But the sum total of those things, Rachel, don't really have a long term benefit, it's sort of projectitis almost. It's worth thinking about how you revisit projects that have been done to see the extent of their sustainability and that to me, would give you a sense about long term partnerships. It'll also give you a sense of track records. We are always clear as the Sickle Cell Society, we want long term partners to work with us over a very long period of time. It is about developing a continuous process of conversation development that can lead to improvements, so I definitely 100 percent agree with that.
[00:04:52] Rachel Stewart: And do you feel like you've managed to facilitate those kind of partnerships? Are those the kind of partnerships the Sickle Cell Society has with industry at the moment, those longer term partnerships?
[00:05:03] John James: Certainly the partners that we've been working with, we've been working with for several years. So those are long and sustainable and, you know, we're able to have free and frank discussions and we're also able, and this is I think a really important point, we're really able to be clear that, you know, what our motivation is and what their motivation is, which might be slightly different because it's usually about new treatments and you know, there's commercial issues associated with that. But there is one common purpose that we both have in understanding what that common purpose is and pursuing that with gusto and pursuing it in a compliant and appropriate way.
[00:05:54] Rachel Stewart: Do you think it's perhaps easier to create those long term partnerships in an area like sickle cell, where perhaps there are fewer companies and fewer treatments available or do you think it really all comes down to kind of planning behind the partnerships and the people involved?
[00:06:11] John James: That's a really good question, and I believe that it is probably easier in an area like sickle cell. Ten years ago, I could count on one hand, three main industry partners that we were having conversations with and we're still having conversations with those partners today. However, if you look at the pipeline of industry partners who are looking at innovation and, you know, code for new potential treatments for sickle cell, the pipeline is huge! Ten years ago, that pipeline didn't exist.
[00:06:49] Rachel Stewart: Thank you. I think that's a really important point.
To go back to my point about measurement, I guess, so at OVID we've been thinking a bit about how to measure other parts of kind of partnerships. So for example, engagement is one of the criteria we look at in the Index and by that, we kind of mean whether the company involved in the partnership, whether all staff in the organisation are engaged in their patient advocacy work and whether they're patient focused and using patient insights in kind of their day to day work. Do you have any thoughts on kind of other measurements, perhaps that aren't just impact, but can be used to assess the quality of a company's patient centricity or sort of patient advocacy more generally?
[00:07:34] John James: So I think there's something about the depth of involvement, involvement, involvement, because the point I'm making there is that involvement may be more than the patient advocacy organisation. It might be people who the, as the organisation serve, but linked to that, other key partners like the NHS, the doctors and nurses who look after what their insight involvement has been in those things.
[00:08:04] Rachel Stewart: Fantastic, thank you.
I'm conscious we've only got a little while left and I, want to give you the opportunity, I guess, to sort of summarise kind of your key tips for organisations looking to establish a partnership.
[00:08:16] John James: Well, based on my experience and time that I've been here at the Sickle Cell Society, the kind of tips that I would give if anybody's thinking of approaching us is to come to us early at proof of concept or before stage. The early point, Rachel, is that there may be things that we think industry could help us with, which may not be the same as what they've been thinking about, but the early conversations enable the partners to put out their stall and discuss of that respective stall, so that's early, conversations.
The second thing I would say, given who we are and the size we are and the resources, both financial and people that we have, don't make assumptions that if you're in a partnership, right, we'll ask that the charity can do this. Sometimes you have to say, oh, hold on, you might be big and global or national, but we simply don't have the capacity to do what you're asking us to do and whilst we might be equals in terms of intelligence and analytical conversation, we don't have a team of commercial people or a team of comms people or a team of, you know, research people, that's not who we are. So you have to work with organisations of our size on our level.
[00:09:43] Rachel Stewart: Great. Thank you so much for joining us.
[00:09:46] John James: Rachel, it's been a pleasure talking with you, so thank you very much.
[00:09:50] Rachel Stewart: No, thank you. Thanks for your time today and your continued support with the Index. Thanks so much.
[00:09:56] Jack Fleming: Thank you for listening to this episode of OVIDcast. This is the final episode in this series of OVIDcast, but do stay tuned for future updates and visit ovidhealth.co.uk to keep up to date with all the latest insights from the OVID Health team.
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