Become a Creator today!Start creating today - Share your story with the world!
Start for free
00:00:00
00:00:01
Patient involvement and shared decision making with Rachel Heatley
176 Plays4 months ago
Welcome to the General Osteopathic Council (GOsC) podcast. In this episode, Steven Bettles, Head of Policy and Education, speaks with Rachel Heatley, Senior Policy and Research Officer at GOsC, about how speaking with patients informs our work, and why this is important. They discuss the importance of incorporating patient’s perspective into our work and shares some examples of where patients have been involved and helped inform our work.
Recommended
Transcript
Introduction to the Podcast
00:00:09
Speaker
Hello and welcome to the General Osteopathic Council podcast. In each episode we speak with experts and colleagues about topics affecting the osteopathic profession and our work as regulator for osteopaths. Answering questions we get asked a lot by osteopaths, patients and members of the public.
00:00:26
Speaker
I'm Stephen
Meet the Hosts: Stephen Bettle & Rachel Heatley
00:00:27
Speaker
Bettle, Head of Policy and Education at the General Osteopathic Council, and I'm joined today by my colleague Rachel Heatley, who's one of our Senior Policy and Research Officers. andre Hi, Rachel. Hi, Stephen. It's lovely to be here today. I'm really looking forward to chatting with you. This is my first podcast with the GEOSC. I have done one or two before, but this is all a learning curve, so listeners bear with us.
Engaging with Patients: Importance and Approaches
00:00:53
Speaker
In today's episode, we're going to discuss how we as an organization engage with patients, how we get the patient's perspective on the work we do and why this is important. And a little later, we'll but take a look at a couple of the examples where patients have been involved in our work and have helped us to create something useful for the profession. Before we do, Rachel, you've been central to the Geosks work with patients over the last couple of years. Could you give our listeners a quick overview? True, Steven, I'm happy to. I'll just kind of say from the outset that working with patients has always been very important to us. um And we kind of communicated with patients a lot in terms of inviting them to participate in surveys and provide feedback on our work. But
00:01:38
Speaker
I think the turning point for us was during the pandemic, there was a recognition that you know across the health sector, patients had been disenfranchised from policymaking.
00:01:51
Speaker
and you know There were quite a few charities like National Voices and the Patients Association who were producing reports that were quite worrying about that aspect of healthcare. I think it was it was a reality check for us as well. and We reflected on what we as an organisation needed to do because as a regulator, our statutory duty is a about protection of patients and and the public.
00:02:19
Speaker
And we can't do that if we're making assumptions about what patients think and are concerned with and you know what works well. So I was given the opportunity in the team to go and speak to experts in the field of patient engagement.
Consulting Experts on Patient Engagement
00:02:36
Speaker
I spoke to you know the NHS, NHS England. I got to speak to Jules Simmons in the University of Leeds Medical School, who's been a real pioneer in this area.
00:02:48
Speaker
And I think ah somebody who was extremely helpful was David Gilbert, who is the former patient director in the MSK area in Sussex. And what we kind of learned there was about how we should go about it. So i am there's no one size fits all for patient engagement. It needs to be relevant and kind of adapted for the people that you're working for. So we really wanted to bring patients on board. And ah one of the first things we actually did was conduct some focus groups of patients about their perspective and thoughts on osteopathy in the context of COVID. And that was really insightful. And I think it was it was a big success in terms of how the focus groups went.
Patient Involvement Forum: Growth and Impact
00:03:35
Speaker
how patients really felt listened to and so we took that forward as a model for the organization and you know taking all this best practice and talking with experts and most importantly listening to our own patients we decided to set up the patient involvement forum in 2021 and that's been a really key driver for kind of incorporating the patient voice in our work And I have to commend particularly osteopaths who have referred their patients to us because they have such a commitment to you know patient safety. and And I really, really appreciate that. They've been very warm towards us. But we've also worked very closely with the Patients Association and Health Watch who have been instrumental in getting patients involved in our work and joining the Patient Involvement Forum.
00:04:30
Speaker
So, as you well know, we've gone from a dedicated small cohort of patients to around 40 members of the Patient Involvement Forum, and that's been since 2021, so it's something we're all very proud of.
00:04:46
Speaker
It's been a big change over the last couple of years, hasn't it? So I've worked at the Giosk for coming up for about eight years and in all of our policy work, we always had the intent and the aspiration to involve patients sin and we did that.
00:05:01
Speaker
But as you say, it was a sort of a fairly small group of fairly dedicated patients who were involved in consultations and focus groups and policy discussions and and the like. And this has been a massive shift over the last couple of years, hasn't it? So can you say a bit more about that and how we went about that?
00:05:19
Speaker
Yeah, I think that's that's a really interesting point. I actually think it comes down to, well, first of all, formalizing things.
Building a Framework for Patient Engagement
00:05:27
Speaker
And I think when you do that, when you create a structure, and I think that kind of gives you a credibility with others to show that you're really committed to this, that it's not tokenistic. And for us, it's absolutely not. And I say that very sincerely.
00:05:44
Speaker
You know, when we spoke to experts, they said that we had to create, and this was a term that I hadn't been familiar with, psychologically informed spaces. And so what that means in reality is that you understand that patients and members of the public or individuals who are coming to you to share their views, but often have a lot of vulnerabilities. We have patients who have chronic health conditions.
00:06:13
Speaker
who are often in a great deal of pain, who have extremely valuable experience, but perhaps have had no opportunity to share their experiences. So whenever we conduct any kind of engagement activity, and that could be having a phone call or a focus group or a workshop,
00:06:35
Speaker
We speak to individuals beforehand and say, what is it you need? It could be more breaks than normal. It could be that we need, if it's a face-to-face event, to ensure that all their accessibility issues are catered for. We have some patients who, for example, are partially sighted, so we make sure that we address their needs. I think that's been very powerful because some of the other experiences that they have had have been tokenistic. It's been, oh, we need a patient to you know to say that they've been able to participate, but it hasn't been perhaps meaningful or real. And as I used the word before, it's been tokenistic and that's the opposite of what we wanted. And I think as a result of that and acknowledging vulnerability, but also acknowledging that they have such a wealth of knowledge to share, I think that's been a big factor in the success. and And I think it's also snowballed in a way because we've had a few patients who have
00:07:47
Speaker
I really enjoyed the work that we've done because, as you all know, Stephen, I am try to be quite a light-hearted person. I think that's very important as well. and I genuinely, personally, am interested in people, and I think a lot of the colleagues that we work with are like that. and People know when you're being genuine and warm.
00:08:07
Speaker
And as a result, we've actually been able to recruit quite a few patients through other patients who have had positive experiences. And I think that's very important. And I suppose lastly on that point, I would say we endeavor to provide feedback to patients. So for example, if they've participated in say they've even just completed a survey on a policy that we're creating, I will always go back to the patients and say, okay, your feedback was X and as a result, here's what we did.
Feedback and its Role in Patient Engagement
00:08:43
Speaker
and If, for example, it informed a paper or that goes to council or the policy and education committee, I then make sure to send them a copy if that's of interest to them. so I think it's authenticity
00:08:59
Speaker
transparency and genuine desire to hear what they have to say. and And what's the work taught us so far? What have we learned from patients over the last couple of years since the Patient Involvement Forum was established in its current form? Oh, that that's a good question. I think I would need all of the podcast series to say how much you know we've learned and what patients have taught us.
00:09:26
Speaker
I think a lot of it is about rich insights and helping us see things through their eyes, walking a mile in their shoes. and i'll I'll give you a clear example. I think one of the big pieces of feedback, certainly early on,
00:09:43
Speaker
was with regards to the language that we used and the number of acronyms. I'll never forget what we try to always do. No, not try to. We always send information ahead of schedule, giving patients a real breakdown of what is going to happen so that they feel confident taking part.
00:10:03
Speaker
And how I used to name the document was briefing document about whatever it was going to be. And I'll never forget speaking to a patient who dropped me an email and said, actually, Rachel, I have a few questions. Would you be free to have a chat and talk them through? And I said, absolutely. So, you know.
00:10:23
Speaker
gave him a call, answered all the questions. And then just as we were about to hang up, he said, Rachel, you know I don't work for MI5. And I was like, yeah, I do know that. And he went, why do you have to call it a briefing document? And I thought, oh, oh, I see. And he also, he he's a very meticulous guy and I have so much time for him. And he said, also, you've used seven acronyms in the document, I went, ah, right, okay. So from that point forward, I never use the word brief in document. I endeavor to remove all acronyms. But I think that's an important lesson because
00:11:06
Speaker
Playing language is important sometimes as health regulators and and anybody working in the health sector, whether that's regulation or clinical care. Sometimes we communicate with patients and we forget that they don't necessarily have the health literacy levels.
00:11:24
Speaker
that we need to adapt our communication so that they can effectively engage with us. So I think plain language, richer insights as well about the work that we do, and even just having a patient in the room a lot of the time focuses all of our of work that once they raise their voice, you think, oh, whoa, whoa, whoa, there's a patient here in the room. Everybody stop and listen and see what it is they have to say. So I think those are some of the things. But as I say, Stephen, you and I could talk about this for another four to five podcasts, but I'll stop there.
00:12:07
Speaker
That insight you mentioned about the insight that we've gained from patients. How has that insight sort of tangibly helped to shape some of the work that we have done over the last couple of years? Can you give us some examples?
Shared Decision-Making Resources Project
00:12:19
Speaker
A long term project of ours has been ah creating shared decision making resources. And that is a big focus of the three year continuing professional development scheme, the new one that was brought in in 2019.
00:12:36
Speaker
and One of the mandatory parts of the scheme is about communication and consent. and We know that patients are extremely satisfied with their care of the care with osteopaths and often that's why osteopaths when they tell their patients about the patient involvement form that they get involved. So there is a real trust there. But one of the things we did discover is that sometimes some of the the issues that patients experience are are kind of things like helping you take control of your care. That's kind of one of the dynamics
00:13:11
Speaker
And then the other is making a plan of action with you. So we've kind of done this long term piece of research with academics in Oxford University to see what we can do to create resources so that patients and practitioners and osteopaths, so that they can make more explicit what's important to them so that they can share their values. So that's a long-winded way of saying it's about improving communication. And what we realised when talking with patients is that
00:13:45
Speaker
There needs to be a myriad of approaches. There's no silver bullet. So through the shared decision making resources project, we created audio recordings. We created an animation. We created some kind of posters for osteopaths to put up in their clinics.
00:14:04
Speaker
and That was really helpful and it got a lot of positive feedback from patients. and Actually, the patients association provided us with a lots of helpful feedback, which then we incorporated. so We actually had lots of iterations of those resources and we didn't just kind of send them out to the world.
00:14:27
Speaker
What we're committed to doing is doing with patients, not for. So before we even considered how to implement the resources, how to evaluate them, before we put pen to paper, we met with patients and said, what do you think of the resources as they are? And they had several changes that they thought we should make and helped to inform the design.
00:14:56
Speaker
And then they also helped to inform the implementation plan. They gave us ideas about organisations that I hadn't been aware of before. Quite a few of our patients, for example, are involved with HealthWatch, other charities, local community groups. And so they gave us insight and and help and often kind of Connections as well contacts that we could get in touch with to say we think you should approach x y or z so that was really really helpful and and an interesting part of the project was for the first time we commissioned an evaluator to look at the resources so as part of that.
00:15:42
Speaker
we wanted to make sure that we were getting the right person. And so one of our members of the Patient Involvement Forum sat on an interview panel alongside GOSC staff to select a researcher. And having patients make that decision with us and help to inform it was really important. And for patient engagement, the gold standard is co-production.
00:16:09
Speaker
And to have that project where really from start to finish patients were involved, they shaped the design, they shaped how we communicated about the resources, they shaped who we chose to evaluate them. And then as part of the evaluation project,
00:16:29
Speaker
patients and osteopaths were consulted very extensively. And so now those have been tested, we're going to produce another iteration. And I know that that seems like a lot of work. I think that's one of the big challenges with it. Patient engagement, to do it right, you need to invest the time and energy. Would you agree with that, Steven? Would that speak to your experience?
00:16:54
Speaker
I do, you know, for listeners who don't know my background, I am an osteopath and I have worked in practice over many years, although I don't see patients currently, I'm still registered. And I think there's a parallel between the the sort of work that as an organization we're trying to do to to understand the patient's perspective and to hear the patient's voice and to work in partnership with patients. There's a parallel between that, I think, and the expectations on osteopaths and what the practice standards say.
00:17:19
Speaker
in terms of you know giving patients the information they need to make choices about their health, talking to them about benefits and risks. If we look at C1 of the practice standards, one of the the explanatory paragraphs under that standard. And the standard itself is about being able to conduct an osteopathic patient evaluation, deliver safe, competent, and appropriate osteopathic care. And one of the examples of what that means is to develop and apply an an appropriate plan of treatment and care based on the working diagnosis. That's fairly obvious. The best available evidence, and that's not, you know, evidence and may or may not be strong for a particular approach, but it's how, you know, how that's discussed. and
00:18:01
Speaker
ah with the patient and agreement gained and the patient's values and preferences as ah as an integral part of that. And I think it's perhaps that bit that although patients, when we've done surveys of patients in the past and they've demonstrated really high ah satisfaction levels of osteopaths, they feel better for seeing them, that that element about the values and preferences was the bit that perhaps wasn't always fully explored.
00:18:26
Speaker
and And obviously the skills experience and competence of the osteopath as well as being integral to that. And it it seemed to me that I think as an as an organization, our work with patients kind of, you know, we expect osteopaths to work in partnership with patients, patient partnership. But as an organization, perhaps we haven't always done that as well as we could to understand the patient ah perspective.
00:18:47
Speaker
And it's very easy to make assumptions because we all are patients of somebody and you kind of think, well, we don't need to. We don't need to talk to patients because we're all patients. We know what it's like to go to a GP. We know what it's like to go to a dentist or to see an osteopath or whatever. So we can bring that experience to our work at the GEOS or on council or on a committee or whatever.
00:19:07
Speaker
But the insight I think that we've gained over the last couple of years has demonstrated that that that's sort of that isn't enough. and And to talk to someone specifically because they're a patient is is the integral element. And it doesn't matter what else they do, what their background is, you know there are some some some happy bonuses because some of them are pretty high flying and have a wealth experience that they can bring to that role. But we're talking to them not because they're the chief executive or of a charity or or a retired psychiatrist or whatever, we're talking to them because they have experience as a patient and they want to bring that perspective to us. And so I think it's important. Yeah, it struck its struck me that we know that as an organization, we don't make assumptions about you know what patients think. And as a practitioner, it's very easy sometimes to think to think also that, you know well, my patients think this.
00:19:55
Speaker
you know and And there may be lots of unspoken things that patients don't say you know, but youve if you've never asked. know Yeah, exactly. How would you know? They may be tolerating all sorts of things because generally they feel better, but there are lots of things that they might want to to enhance or change perhaps. you know So unless we actually understand what's important to patients and what you know that the um you know it's difficult to um to make fully informed decisions in partnership with patients is what I'm saying in a somewhat rambly way now. But that's what what I was trying to illustrate, I think, was the the parallel between what we do as an organization and what the standards ask of osteopaths as well in relation to patients taking their views into account, acknowledging their own values and preferences, and thinking about what that means in the context of what we do.
00:20:43
Speaker
What about the future? What are our plans for the next few months in terms of patient involvement? Is anything changing or is there anything particular project that we're we're seeking insights on from your perspective? oh Very good question. Very exciting. But I'd say challenging in a good way times are ahead.
00:21:04
Speaker
So as I i mentioned before, co-production really is the gold standard for anybody that's doing patient engagement and doing it well. And it's really been an iterative process for us, a really steep but wonderful learning curve.
Future Plans for Patient Involvement
00:21:24
Speaker
And the next step is to reach the gold standard. So when I say that,
00:21:30
Speaker
We have got approval from council to recruit two patients to sit on council and having patients at that strategic level involved in governance, I don't say this lightly, it is a big deal.
00:21:50
Speaker
Having them involved in decision making, having their insights is is's just wonderful. It's something I think we're all really proud of throughout the organisation that we've managed to achieve this because it is, in a way, something very different. Very few organisations do it.
00:22:09
Speaker
And so we're we're really pioneering it, but we want to do it right. So it's not going to be in the next month. We want to consult with patients and of course council to see, OK, what will this look like? So I have I have written quite a few papers for council and the Policy and Education Committee, and they've been heavily involved in shaping what it will look like.
00:22:39
Speaker
The next six to 12 months will be about creating the parameters, trying to think of a better word. you know In my mind, I'm thinking, how would a patient describe it? What would be the plainer language? What would be more accessible? I think, what will it look like? We need to you know get job descriptions. We need to really think how we try to do it is say, OK, where do we want to get to?
00:23:07
Speaker
what qualities and values and experience do we need from patients? What can we do to create the right space for them to contribute in a meaningful way? so that That's kind of what we're aiming for for 2025. Although that seems like far away, it certainly isn't. and We want to get this pilot right because it is it is innovative, it is something different. but because it's so different there's always that you know desire to get it right and if you haven't done it before it has to be a learning curve and as i say we've come a long way since 2020 but i i think there's
00:23:51
Speaker
there is more to do. and And having patients involved at that top level, honestly, if I didn't believe in it, I wouldn't have pushed so hard for it. I think it's going to be really, really insightful and helpful and be a a wonderful addition to the work that we do. Yeah, no, I agree. I mean, for anyone who isn't familiar with the makeup of our council, I mean, there are lay members of council. There are osteopathic members of council.
00:24:20
Speaker
But there isn't a specific patient voice, and we um and we you know we we kind of gather that in other ways, and we we we present that to committees and to council to inform the decisions that council make. But there isn't that kind of first-hand experience of of that representation. So this does feel kind of an innovative approach in terms of regulation, I think, from what we do. yeah so Rachel, thanks so much for joining me today and explaining so clearly what you've been doing with patients and the work that we do as an organisation overall. If any of our listeners would like to find out more about the Patient Involvement Forum or another patient that might be interested in joining, you can look at our website, osteopathy dot.org.uk, where you'll also find the shared decision-making resources that we were talking around and about earlier.
00:25:09
Speaker
The links for these will be in the show notes for this episode. So Rachel, thanks once again for joining me. It's been great talking to you. Thanks Stephen for the opportunity. I really appreciate it and I hope people enjoy the podcast.