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OVIDcast by OVID Health explores current issues in the health and life sciences sector.
In this series, experts from patient groups provide their insights on how to strengthen partnerships between patient groups and industry for better healthcare outcomes.
[00:00:00] Jack Fleming: Hello and 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 health care for patients.
In this episode, Rachael Stewart, Deputy Head of Patient Partnerships at OVID Health, and Rachel Power, Chief Executive of the Patients Association, explore how the Patients Association supports patients to shape the healthcare landscape.
[00:00:43] Rachael Stewart: Hi Rachel.
[00:00:44] Rachel Power: Hi, Rachael. This is going to get difficult with two Rachel's.
[00:00:48] Rachael Stewart: Yeah, luckily you have a lovely Irish accent so that will us easy to distinguish. A good place to start would be if you could give us perhaps a bit of an intro to the Patients Association.
[00:00:59] Rachel Power: Brilliant. Thank you, Rachael, I'm delighted to be here. It's always a lovely opportunity to talk about patient partnerships. So let me tell you a little bit more about The Patient Association. So we are 60 years old this year, and we were set up by a part time teacher who believed the patients weren't getting the right information around thalidomide and the patients weren't as involved in decisions about their care as would like to be, and, so uniquely for a charity with a remit covering all health and care issues, we work with patients directly, and they are our members, and they are the people who come and work with us on focus groups and patient experience surveys.
So through our helpline and our online resources, we provide information to thousands of patients each year about health and social care, and our day to day contact with patients means that patient experience is at the heart of everything that we do, and patients place their trust in us to reflect what we hear from them and use what we hear to make that case for change, to bring that case to change, to the NHS and the department and to local ICSs.
[00:02:10] Rachael Stewart: That's a really helpful overview. So if you could give us a bit more information on your latest strategy which looks at true patient partnerships and I guess what you think underpins that, what's the definition of a true patient partnership for The Patients Association?
[00:02:25] Rachel Power: Brilliant. So during COVID, we got together with our trustees and looked at the future of health and care, and our theory of change looks at patient partnership and the design and delivery of services, and that includes all services, includes healthcare services, includes the way that we work with some of our industry and our corporate partners and other project partners.
So, we talked about in a well resourced system, the patient involvement would enhance services and drive them towards excellence. But in an underfunded system, it enables scarce resources to be used to maximum effect and failing to involve patients in either of those scenarios has two inevitable consequences, we believe, poorer outcomes for patients and ineffective use of public resources and then we took that one step further and to develop our thinking further, we worked with patients and we worked with healthcare professionals and system leaders and we identified six key principles of patient partnership, and those are around treating patients as equals, patients who are fully informed, shared decision making and patient partnership being a matter of course and routine, recognising inequalities as we've all heard so much in the last few years, the fifth one is around seeking patient input, and patient input being actively sought and genuinely valued and meaningfully acted upon, and then the last is joining services up around patients. So having looked at all the national guidance that's out there, we're doing a lot more work in implementing those principles along with a very simple guide as to how you can implement these principles within your local ICS systems or your local area.
[00:04:14] Rachael Stewart: That's really interesting. Thank you. So in terms, I suppose, this is looking very much at how patients and healthcare providers, healthcare professionals can work together. How do you think we're getting on in that sense? Do you think progress has been made? Do you think there's still a long way to go?
[00:04:31] Rachel Power: I think we do have a long way to go. I think there's pockets of excellent practice out there. We've done surveys with healthcare professionals around shared decision making and we see a real positivity towards achieving true patient partnership and shared decision making and there's a lot of national guidance out there, so I suppose post COVID, I think we have a health care system that's under a lot of difficulties, and we still hear from patients regularly who aren't accessing the services they need, not getting the information and the communication that they need, and not being truly involved in decisions about their care where they actually want to be.
At the beginning of the pandemic, the NHS showed its ability to change services and to develop new services at speed, but patients weren't involved in that and what we're pushing for now is to make sure that patients are really involved in the design and delivery of new services post pandemic.
[00:05:30] Rachael Stewart: Great. Do you want to say a bit more about those projects?
[00:05:32] Rachel Power: So we're working in partnership with NHS England and the Royal College of Physicians around the patient involvement aspect of the outpatient strategy for the future and, you know, what we've been doing is holding focus groups with patients, working directly with patients, and those patients are going to the strategy meetings, they're going to the steering group meetings, and working with clinicians together to understand the experiences that patients have had of outpatients, the good experiences and the not so good experiences, and working together to really come up the strategy for the future. It's that what matters to you question. What's important to that individual and how can we work together to make sure that they get the best possible health and care outcomes?
[00:06:14] Rachael Stewart: Thanks. It does sound like there's some really positive best practice examples out there and that progress is happening. Do you have a sense of what does good look like by 2026? What are the measurements or the objectives that you're hoping to see by that point?
[00:06:29] Rachel Power: Difficult question. This will be about how we measure patient experience, and sometimes we measure patient experience from the impact on, of the service, rather than the impact on the patient to live their life to the full. But what I'd want to see within the five years, that we have some really good examples of how this works well, and the impact that that's had on patients and that will be done through measuring the experience of services, because if they've been designed with patients, and patients have been truly listened to and involved in those services, then we should be seeing really good experiences.
[00:07:07] Rachael Stewart: I think that's a really important point actually around quite often partnerships are viewed from what it's achieved for the service and not from what it's achieved for the patient. I think that's a really, a really valuable point and comes back to that kind of patient input, co-creation and empowerment.
[00:07:23] Rachel Power: I think it's about power as well, and it's about, you know, if you go into an individual consultation across the healthcare system, you're going into that person's surgery, that person's consultation room, that ward, you know, you genuinely aren't the person that has the power in that room. I've been challenged before about... I use empowerment as well, and I've been challenged before by some patients who say, well, if you say people are going to empower us, it means they can take that power back. It's up to us as patients to hand that power over. So I think that's a really key way that we can measure patient partnership as well.
[00:08:03] Jack Fleming: Thank you for listening to this episode of OVIDcast. Next week, Rachael and Rachel discuss how pharma companies can engage with harder to reach patient groups and ensure that partnerships are truly co-created. If you enjoyed the show, why not share it with a friend and subscribe so you never miss an episode.