Episode 25: How do we move towards truly consumer-centred health care?

Voiceover:

Welcome to the NPS MedicineWise podcast, helping health professionals stay up to date with the latest news and evidence about medicines and medical tests.

Steve Morris:

Hi, I'm Steve Morris, CEO of NPS MedicineWise, and welcome to another of our regular podcasts. In this podcast, we have a particular focus on consumers. So I'm delighted to be joined by the CEO of the Consumers Health Forum of Australia, commonly referred to as CHF, Leanne Wells. Hi Leanne.

Leanne Wells:

Hello, Steve. How are you?

Steve Morris:

Yeah, I'm very good thank you. Could you just tell our listeners a little bit about CHF?

Leanne Wells:

CHF - we're the national peak body for healthcare consumers, and also those with an interest in healthcare consumer affairs. So we've got many members that are consumer and patient organisations in their own right, as well as research institutes and professional associations and individual consumers as well. So our main job is to really inject consumer insights and consumer voice into, you know, the big national policy debates of the day.

Steve Morris:

And how long has CHF been around, Leanne?

Leanne Wells:

We have been around for almost 40 years, about 37 or so years.

Steve Morris:

Right, a significant length of time for a health organisation.

Leanne Wells:

Not too bad. The longevity is pretty good.

Steve Morris:

Yeah. So look, Leanne, you just come off a really big week, a big summit on the 18th and 19th of March on consumer health entitled ‘Shifting Gears’. Do you just want to explain what the title was meant to highlight in the conference?

Leanne Wells:

The title really, it actually pegs back to a white paper we published in 2018 and we chose the title shifting gears because in that white paper, we wanted to highlight two things. On the policy front, we wanted to highlight the main health policy shifts that are needed across the system at a service delivery level to make both policy and care delivery more person-centred. But we also wanted to draw our attention to the, I suppose the maturing role consumer advocates are playing right across the board, be it in research and shaping research, sitting at policy tables, participating in service, redesign exercises and service commissioning at PHN levels. We wanted to highlight that, you know, consumer advocates and representatives are not a homogenous group. They play many and varied roles, but we also need to shift gears there as well, in terms of the value that's assigned to the insights and advice they bring, and also the support and education and leadership development that they need to really fulfill their roles in a maximum way. Hence the term ‘shifting gears’.

Steve Morris:

Yeah, thanks for that explanation Leanne. I thought it was an excellent and engaging conference that was completely virtual. So just before we get into maybe some of the themes, what are your thoughts on the challenges and opportunities of virtual conferences?

Leanne Wells:

I'm absolutely sold on virtual conferences. I must say I was pretty apprehensive because we knew, you know, we all know the value of face-to-face networking, but to be COVID safe, that's what we decided to do, but we have had nothing but positive feedback about how engaging a fully virtual platform was. And it's actually quite intimate. You know, you've got the, instead of the, you know, the keynote speaker being, you know, almost blurred person up on a stage in an auditorium, you've got them in your office or in your lounge room speaking to you directly from your laptop or screen. So it's very personal intimate.

And the other really powerful thing about it is the immediacy of the chat. Particularly when people engage with that, which they did with our summit, you get immediate feedback, temperature of the room, what's the issues and thoughts and themes that are running through people's minds. The things there the speakers are provoking them to think about. So, absolutely sold on virtual platforms and I can't see them going away. I mean, I think they're cost-effective as well. You know, they allow participation for those that otherwise often struggle to afford airfares and accommodation in order to come into a face-to-face conference in a CBD.

Steve Morris:

Yeah, look, and I think lots of organisations have the same thoughts Leanne and certainly from NPS MedicineWise’s point of view, our future conference will be virtually based for the reasons that you've just highlighted.

In terms of the significant themes coming out of the conference maybe firstly I wanted to start on consumer engagement, and the catch phrase “nothing about us without us” seems to sum up the discussions about how consumers can and should be involved, not just at the consultation or governance level, but truly involved in co-designing projects and programs in genuine partnership. So what do you think health organisations and health professionals need to do fundamentally to move towards truly consumer-centred care?

Leanne Wells:

That's big question, Steve. So I'll just offer some, you know, sort of observations and reactions to that. I mean it's not to say that organisations, service providers, clinicians don't offer consumer-centred care. I mean, by definition the delivery of care is fundamentally about the people receiving the care. I think, it's much more these days about the relationships and the way clinicians or health administrators interact with consumers. So, at the sort of point-of-care delivery end, it's much more around clinician behaviour that, embraces shared decision-making, embraces consumers. One of the terms that came up at the conference was the notion of the wise consumer, which actually speaks to your Choosing Wisely initiative, where what we're really trying to do is equip consumers with both information, but also to say to them, look, you've actually got the imprimatur to ask questions of your provider and the Choosing Wisely questions lead to better decision-making and goal setting and those sorts of things.

So I guess on the clinician provider side, we really saying, we just really need clinicians to be open, to share decision-making to not be fazed when consumers ask questions cause that's a good thing. You know, the fact that they do might do a bit of Googling before they come into a consult, that's actually a good thing because it's not to threaten the GP or the specialist's advice, but it's actually a consumer saying, look, I'm actually activated and motivated to really engage in these discussions with you to get the best health outcomes. I think digital is a really exploding area. It's by definition, empowering the consumer and in some ways the train has left the station there. And, it's almost a case of providers needing to play catch up because consumers as I mentioned, Google, they go to the internet, they use mobile health apps and there's some caution around that, you know, there's obviously quality and safety issues and we know that there needs to be some work done to assure people that they're using evidence-based apps.

But again, digital is a huge enabler and I think we need both consumers and clinicians to embrace that. And then there's models of care, obviously team-based care organising care around the person and at an organisational level there’s organisational constructs. How are we involving consumers in boards of governance? And you've got a consumer on your board and you've got a consumer advisory committee and you've got working together arrangements with us. So those sorts of organisational attributes are what organisations need to do as well. Getting consumers involved in governance, in leadership, in some organisations even have paid patient advocates on staff. I mean, we had a speaker at the summit, David Gilbert, who fulfills a role like that in the UK. So we're all on a maturity trajectory with this sort of stuff really.

Steve Morris:

Yeah. And as you said Leanne, that was a very good question, of which there are many aspects. I'm just going to pick on one element that you spoke about, which is, I suppose, the digital evolution or revolution and constructs such as telehealth and look, many people are digitally savvy, but others are less so or less able to use and access technology. So how do we build equity in accessibility into this digital enhancement and evolution so people aren't left behind.

Leanne Wells:

That's a big concern of ours. And we had a consumer commission, a COVID consumer commission produce a report during the year on the fault lines in our health system exposed by COVID and, the so-called digital divide which is what you're referring to came up as a big issue, because it is fundamentally an equity issue and we are risk - digital health and access to digital health should be, it's a fundamental, right? So how we overcome that look, I think there's a lot of work needing to be done on both the clinician and consumer side on digital health literacy, which sounds a bit jargonistic I know, but basically getting people to the point where they're comfortable using the tools and devices, there's some really good, a model in particular that we're quite intrigued about and looking into a bit further at called ‘digital navigators’.

They're rolling these out in Denmark, and they're people with technical but also clinical expertise who work with service providers and consumers to get them comfortable with using the tools and embedding them into their practice on the provider side and on the consumer side, you know, they, sort of coach them to be comfortable using telehealth and apps and things like that. And My Health Record, even for that matter, you know, those things.

So digital navigators is something we're really interested in. And I think the other big issue is for lower socioeconomic people who often are the ones, as we all know that need the more comprehensive care, because they're often the ones that have much more complex multi-morbidities to manage, to see a person with a device is one thing, but whether they can afford the data pack, you know, the data packages and things like that, that are needed to really deploy these devices for digital telehealth, virtual care purposes, is often an assumption we make. And, it's an access issue that we overlook. So that's something that really we need to keep an eye on.

Steve Morris:

Yeah. So there's all these great opportunities that digital health can deliver, but also some challenges for, for significant part of the population. I just want to just change tack and talk a little about health literacy. And I know that as part of your conference, there was a masterclass hosted by the Health Literacy Lab. So from your perspective, what role does health literacy and in particular medicines literacy play in helping ensure people don't get left behind?

Leanne Wells:

Oh, I think it's pretty fundamental. I mean, health literacies, or, you know, all about the wherewithal having access to information, education, knowing where to look to find the right healthcare services, knowing the questions to ask - it's a real enabler. So health literacy, digital health literacy, medicines health literacy, understanding CMI (consumer medication information), you know, it really cuts to the core of the whole quality use of medicines agenda. If we don't have people fundamentally able to access and comprehend and act on CMI, then we've got a long way to go. So, which is why it was great to work with you, Steve and NPS MedicineWise on the consumer segmentation research that we did last year. And that was also discussed at the summit, how do consumers actually segment and what we know about consumer medicine, health literacy in particular, what does, what, you know, what are the implications of that for patient education programs and QUM programs that we need to consider.

Steve Morris:

Yeah. And hopefully over the coming year or so, we'll be able to take some action on some of those findings from that research. There's so much in the conference Leanne, are there any other themes and actions that you particularly want to highlight?

Leanne Wells:

Well, I think, you know, associated with, I mean, so many themes and sayings and highlights came out of it, I think associated with health literacies is the concept of patient activation. And again it's a bit of a jargonistic term, but I think a really powerful tool, it's an important patient behaviour issue that providers really need to be aware of. And there are some fantastic tools that can be used by providers, validated tools to gauge where patients sit on a spectrum of patient activation and to get a gauge on that is so powerful because if you’re a GP dealing with someone who is very, very low on an activation scale, it's going to be arguably all the more challenging to get them as active participants in shared decision making, get them signed up to and compliant and committed to following through on a chronic care plan or a mental health care plan or whatever it might be.

And it's also arguments for how we might, cause there's all sorts of discussions going on at the moment about the ten-year primary health care plan and what sort of models of primary health care we should have for the future. Progressive models really should be very team-based. We should have health coaches nested into general practices to help with some of those patients who are lower on activation scales, lower on levels of health literacy scales. We should have, back to QUM and medicines literacy and medication compliance. When this is starting to unfold with funding by prime health networks and others - non dispensing pharmacists actually nested in a general practice and working alongside a GP on QUM and patient education around medication adherence, they are the sort of models of care we need to see. So I think implications of the discussions at the summit drew my mind to where we want future primary health care reform to go.

And then there were the really big issues like climate change and health, I think the consciousness is really starting to hit us when you look at the health impacts of drought, when you look at the health impacts of bushfires, climate change has a very real health impact. So we traversed a lot of ground at the summit and the need for consumer leadership and really valuing that, investing in it and growing their skills, right down to some of the more operational imperatives, which again, some organisations overlook and NPS MedicineWise certainly doesn't, but you know, remunerating consumers who are engaged to advise and sit on committees and working parties for their time in the same way that clinicians are paid for their time.

Steve Morris:

Yeah, thanks, Leanne. As you said, many many things coming out of the conference, I mean, to me all indicating the absolute necessity for collective action for everybody involved in the system at both an individual and organisational level. Obviously as national organisations, NPS MedicineWise and CHF signed a working together agreement a while ago. And I suppose it's just that question, you know, how important do you think those formal partnerships and collaborations are between organisation in achieving the many challenges that we have?

Leanne Wells:

I think partnership and collaborative practice are fundamentally important to driving change. And it's about, several things, isn't it? It's about each organisation understanding each other's world, but also each organisation bringing its assets to the table; your knowledge and expertise, our knowledge and expertise, our networks, your networks. So it's exactly that: it's collective impact and collective action around, on topics and on issues where we share a common purpose and a common desire to reach a common goal. And in our case and your case, that's quality use of medicines and Choosing Wisely and better health literacy and consumers better equipped to be very wise consumers as our summit discussed.

Steve Morris:

Yeah, absolutely. Well, thank you Leanne. We could talk for much longer on many themes from the conference and priorities at the moment but thank you for coming on the podcast today.

Leanne Wells:

Oh, thank you for the chat, Steve, I really enjoyed it.

Steve Morris:

Yeah. Thank you. And just, I'm just going to take this opportunity for one shout-out about another virtual event or two virtual events, the NPS MedicineWise National Medicines Symposium, which is on Tuesday the 18th of May on the topic of ‘Evaluating quality use of medicines: How do we know that we're making a difference?’

And the second conference on the 19th May is the Choosing Wisely Australia National Meeting.

So if you're interested in those conferences, please just go to our website where there's further information. So thanks again for listening.

Voiceover:

For more information about the safe and wise use of medicines, visit the NPS MedicineWise website at nps.org.au.