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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, welcome to OVIDcast. Here at OVID Health, 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, speaks to John James, Chief Executive Officer of the Sickle Cell Society and one of the independent judges of OVID Health's Patient Partnership Index, about the progress he has seen healthcare partnerships throughout his career.
[00:00:46] Rachel Stewart: Hi John, thanks so much for joining us. So I thought maybe if we start by just kind of giving you the opportunity to introduce yourself and also if you want to introduce the Sickle Cell Society and explain to our listeners what sickle cell disease is.
[00:01:00] John James: Thank you.
Yes, I'm John James, I'm the Chief Officer of the Sickle Cell Society, the national charity for sickle cell. My background is very much the NHS, so started out as a management trainee and did various chief executive posts in the NHS and also, as a senior civil servant at the department of health and I've now been with the Sickle Cell Society for about 10 and a half years as its leader and the Sickle Cell Society is a really important organisation. It was set up because in the 70s, there was a complete lack of understanding amongst healthcare professionals and the NHS generally about sickle cell and what happened was that patients, healthcare professionals came together and created this organisation.
And so some people might say well, what is sickle cell? Well, the first thing you should know is that sickle cell is the country's biggest genetic blood condition, predominantly affecting people of color and mixed race individuals and what it is, and the clue's in the name, I guess, when a blood cell becomes sickled, it is the shape of a sickle, it is banana shaped, and it gets stuck in the blood vessels. And essentially, when it gets stuck in the blood vessels, there is no oxygen going to wherever it gets stuck and the impact of that is normally pain that necessitates a hospital admission. The pain is so severe, a patient colleague I work with described it as somebody hammering a nail into their body. But importantly, it isn't just this issue of pain. Over time, Sickle causes damage to various organs in the body. So it's not unusual for somebody with sickle cell who's in their late 20s to have a hip replacement because of necrosis of the hip and of course stroke is a significant complication because there's no oxygen going to the brain. So it's both the pain and then the impact of the condition on the body, but just to conclude those two things, Rachel, that this has a really significant effect on the quality of an individual's life. So school, work, if you're an adult, higher education, if you're an adult, relationships, family dynamics, friendships, and all those things.
[00:03:52] Rachel Stewart: Thank you, that's a really helpful summary and I think really brings to life how serious a condition it is and also how it impacts people.
So how does the Sickle Cell Society support people with sickle cell disease? What services do you offer?
[00:04:08] John James: Yes, Rachel. So we're a campaigning organisation and our campaigning is about ensuring that policy that's NHS policy is in tune with what's needed to address the health inequalities in the Sickle space. We also provide specific services to support the sickle cell community. We run a helpline five days a week and we get calls from all over the country, for a range of support that individual patients may need. But we also provide services such as our peer mentoring program, which seeks to support individual young people up to the age of 24 to help them become more resilient about their condition, learn more about their condition, meet other people who have their condition, and it helps them to better manage their condition. The evidence so far is that program of work is shown to save the NHS money. So we provide those sorts of services and we also work with the NHS sickle and thalassemia screening programme to ensure that patients get the best service for counselling and all of those services when they are planning to have children who may be affected by the condition.
[00:05:36] Rachel Stewart: Gosh, that's quite a broad range of stuff and must keep you very busy. But it sounds like, like you say, it's delivering real impact and really helping people with sickle cell disease.
[00:05:46] John James: But just on that point, that's credit, I think, Rachel, to the volunteers, the staff, the trustees, everybody associated with this organisation.
[00:05:56] Rachel Stewart: Thank you.
So to just give our listeners a bit of context, obviously, we've invited you on to the podcast because you are the CEO of a patient organisation and a charity supporting patients. But you're also a judge on OVID Health's Patient Partnership Index, a global initiative set up to benchmark partnerships between patient organisations and biopharmaceutical companies and life science companies. You've seen quite a few partnerships come through the Index and evaluated them. So I was just wondering if you could perhaps provide some insights into your role as a judge on the Index and what that looks like.
[00:06:37] John James: Thank you, Rachel. I mean, the first thing I would say is congratulations to OVID Health because I think the Index is an important tool to assess the contribution of industry in its work with patient advocacy organisations. Obviously, I've been very privileged to be a judge. The important thing for me in terms of the insights I gained from being a judge is how, whatever the condition might be, is how innovative some of the industry and patient solutions to improve partnerships are. Some, the creativity is just quite amazing and I think the second point is that the impact that sometimes a small level of funding between industry and patient advocacy, that small level can have such a enormous impact. And what I mean by impact in this context, Rachel, is about improving the lives of the people who live with that particular condition. I think it is also a learning tool for industry to understand the best practice of working with patient advocacy organisation, what works.
[00:08:05] Rachel Stewart: Thank you.
Do you have any examples of successful partnerships that you've been involved in that particularly stand out, whether that's now as part of your role with the Sickle Cell Society, or perhaps even when you were in the NHS or the Department of Health?
[00:08:20] John James: Yes, there are a few and I'd probably start back in my days in the NHS. So we were in an area where at, the time, and we're talking about the kind of eighties where there was a huge homeless population, usually young mothers and children and with the local authority and the voluntary sector, we commissioned a new general practice that was supporting that group of patients and so there was partnership with the voluntary sector, there was partnerships with the local authority and of course, homeless families and we created that practice. And the second example, which is more local, more here at the Sickle Cell Society is our peer mentoring program, which we worked with patients and the NHS about, and that service was piloted in a London borough, was then extended over several years to seven other boroughs, and we are now in the process of extending it to the whole of London. And the third example, and I use this example because it's relevant to what we're talking about in terms of partnerships between industry and the voluntary sector. So sickle cell alarmingly has only two licensed treatments, okay. The biggest genetic condition in the country, with only two licensed treatment compared to like conditions where there are several hundreds. So the really important thing here is our work with industry and partnership has been encouraging those industry partners who are in the red blood cell space to work closely with us and innovate to create new solutions for, the sickle cell community and certainly the partners that we have worked with have been all positive. Yes, we might have different reasons why we're working together, but the one common purpose is that we want to see more effective and safe disease modifying treatments and curative options for people who are living with sickle cell.
[00:10:41] Rachel Stewart: Thank you. Some really great examples of the impact that partnerships have had.
So I guess thinking both as a judge of the Patient Partnership Index, but also your time working within health, do you feel like partnerships between patient organisations and life science companies and also healthcare providers where relevant, do you think they've improved over time? Do you think they're becoming more impactful, more collaborative?
[00:11:09] John James: I believe they are improving. So we're on this journey of improvement and over the two years of being a judge, I have been struck at the innovation that I've seen, and so there is good evidence over those two years of improvement and I think that's a positive thing. I think where there is further work to be done is thinking outside of the box for what those partnerships might entail, focusing on those underserved areas that don't get a lot of attention.
[00:11:49] Rachel Stewart: I think that's something that we've noticed as well, that the partnerships coming through the Patient Partnership Index are increasingly looking at those kind of knotty issues, so health inequalities, unmet need, and I think partnerships are a really promising way to kind of tackle some of those bigger issues.
I suppose to bring it back to the sickle cell community, what are your ambitions or hopes for sickle cell disease in the next five to ten years, what do you hope will be achieved for the community and for patients with the condition? And how do you think partnerships will help you achieve that?
[00:12:29] John James: Well, I hope in the next five years there'll be a redressing of the imbalance of the unmet need for sickle cell. So by that, Rachel, I mean that the services that people live in with sickle cell get bigger and better and are not a postcode lottery, which they are at the moment and that's certainly a hope over the next five years. And I think we've begun that. We're still at an early stage because through the No One's Listening Report and the role of the all party parliamentary committee we have got NHS England looking at a transformation plan for sickle cell in the United Kingdom so that's a start but at the end of the day the outcome of these hopes should be that whether you live in Bristol or Cumbria and live with sickle cell, that you get a high quality of treatment and good access. And the way that industry can help with that is that it should be working with patient organisations like the Sickle Cell Society, to help in that strategic goal, and so this is where Rachel, industry, when I say let's set out our store and have that long term relationship, the long term relationship with industry isn't projects now and again. It's about how industry is supporting that global strategic objective of actually, because for them, if the sickle cell service pathway is better, that's good for industry. It means, you know, more take up of treatment and so forth. So it's about them thinking less about the projects, but more about the strategic ambitions of sickle cell, which has benefits of itself for them.
[00:14:32] Rachel Stewart: That is such a fantastic summary and I think a brilliant note to end on.
[00:14:36] Jack Fleming: Thank you for listening to this episode of OVIDcast. Join us again next week when Rachel and John discuss what makes for innovative, sustainable partnerships. If you enjoyed the show, why not share with a friend and subscribe so you never miss an episode.