Behaviour change, chronic condition management, and the role of digital technologies

In the latest episode of Up, Up and Away, host Dom Burch speaks to Dr. Pamela Rackow and Alexandra Dima - two esteemed researchers in the field of health psychology and digital health. Pamela is a Psychology Lecturer at the University of Stirling, who specialises in the mechanisms of behaviour change and the role of digital technology in promoting healthier lifestyles.

Alex is Principal Researcher at the Avedis Donabedian Research Institute - Autonomous University of Barcelona. Alex focuses on person-centred care and improving the management of chronic conditions through collaborative care and self-management support. Her research spans a variety of conditions including asthma, HIV, cancer, and stroke, with a strong emphasis on shared decision-making, treatment adherence, health literacy, and eHealth.

In the podcast they cover several key themes in health psychology and digital health, particularly focusing on behaviour change, chronic condition management, and the role of digital technologies.

Health Behaviour Change and Digital Technologies:

Dr. Pamela Rackow emphasises the importance of digital technology in promoting behaviour change, particularly in the context of chronic conditions like asthma. She discusses various interventions, such as digital apps and gamification, to support individuals, especially young people, in managing their health. For example, she mentioned using WhatsApp groups to support healthier eating and a gamified app to educate young people about COVID-19, which not only informed but also reduced anxiety by engaging with the subject in a controlled way.

Person-Centred Care and Self-Management:

Alexandra Dima discusses the importance of person-centred care and the challenges of self-management for chronic conditions. She highlights the diversity of healthcare systems across Europe and the need for tailored care that considers individual circumstances. Dima also touches on the need for better communication between healthcare professionals and patients, as well as among professionals themselves, to improve care outcomes.

Challenges in Behaviour Change:

Both Pamela and Alex agree that behaviour change is complex, with diverse and individualised reasons for certain behaviours. They discuss the need for tailored interventions that consider a person’s current context and life situation. Dr Rackow points out that small, manageable steps are crucial for empowering patients and fostering self-efficacy, which is essential for long-term behaviour change.

Role of Collaboration:

Both researchers emphasise the importance of collaboration between universities, healthcare providers, and digital health developers. Dr Rackow expresses a desire for more partnerships to translate research into practical digital health solutions, while Alex Dima discusses the potential of the Enable repository to foster collaboration and share best practices across Europe.

Future Trends in Digital Health:

The conversation ends with a discussion on future trends in digital health. Alex Dima highlights the challenge of balancing technological integration with maintaining diversity and user engagement. Dr Rackow is excited about further collaborations that can bridge the gap between academic research and practical digital health applications, ultimately leading to better patient outcomes.

Transcript

Dom Burch: 0:09

Welcome back to the up, up and away. The podcast from tiny medical apps with me. Dom Burch, today, my guests are two very esteemed researchers in the field of health, psychology and digital health. First, we have Dr Pamela Rackow, who is the psychology lecturer at the University of Stirling. And Pamela is a health and social psychologist who specializes in the mechanisms of behavior change and the role of digital technology in promoting healthier lifestyles. She has an extensive experience working in multi disciplinary teams and collaborating with industry to advance health behaviors like exercising, self management and healthy eating. And then joining her, if that wasn't good enough, we have Alexandra Dima. Now. She is a senior researcher in health psychology and health services. Alex focuses on person centered care and improving the management of chronic conditions through collaborative care and self management support. And her research spans a variety of conditions, including asthma, HIV, cancer and stroke, with a strong emphasis on shared decision making. Pamela and Alexandra. Welcome to the podcast.

Pamela Rackow: 1:18

Thank you very much.

Alex Dima: 1:19

Thank you. A pleasure to be here with you.

Dom Burch: 1:21

Now, the reason we're together is it's particularly timely because the digital health passport has recently been listed on the Enable repository. And I just thought, for those who aren't familiar, I thought it's probably best if I just explain what enable is. It's an initiative that raises awareness about the diversity of medication adherence technologies. Now, those in the know that's called martech, or M, A, T, E, C, H, and it's available across Europe. These technologies include electronic devices that record medication intake, dose dispensers, mobile applications that provide health information and reminders. And you know, that's the reason that we're here today. So maybe Pamela, can I start with you? Can you just, you know, set the scene a little bit, tell me a little bit more about your research in health and social psychology and and how digital technology plays a role in in behavior change, and ultimately, I guess, trying to improve health outcomes.

Pamela Rackow: 2:15

Yes, yeah. My pleasure. So I think my research, in general, yeah, interested in health and health behavior change and in developing interventions to support people to change their health behavior. And then when we look at intervention development, we in health psychology and research in general, still see that sometimes knowledge is something that is a little bit overrated, yeah. So it's oftentimes saying, Oh, if you know what this is all about, or if you know that you are at risk, then that will motivate you to change your behavior. This is sometimes the case. Oftentimes is not the case. So I'm particularly interested in your social environment and how your social environment can support you with behavior change. So things that I've done in the past, for example, I've done interventions where people were looking for a new sports companion to exercise together, and this new sports companion then supported them to exercise more across like two months, or going a little bit more into a digital context. I've also been part of a team where we put together people in WhatsApp groups as like a like an online support group. So you had your own online support group in supporting healthier eating, healthier eating for us in this specific context was reducing snacks and eating more fruit and veg. And then from this on, I think I went a little bit more into the digital aspect of health behavior change, and also a little bit more into the aspect of asthma and chronic conditions. So I had an MRC funded grant where we developed interventions to support young people with asthma to take their medication as prescribed, and the context variable that I talked about earlier was, for example, their parents. So we particularly looked at how these young people between eight and 16, so that was our age group, how these young people could become a team with their parents and become a team with their healthcare professionals. So one intervention element, for example, that we did with these young people was that they had a bit like they had a spider web, and in the spider web they identified people that could support them with their taking their medication as prescribed. I'm also I was part of a team, and we developed a game to to educate. So that was more like an educational game. Came to educate young people about covid. So this game was before we had a vaccine. So you can imagine how long ago that was so and then we did like some gamification elements where people, or young people, could choose like different weapons to like fight against covid. Some of them where vaccines, certain types of medication in order for them to under one and understand covid a little bit better. But then also, there is some research that shows that engaging with something that you are a little bit afraid of also reduces your anxiety. So, so that was also the idea. The idea was, of course, Knowledge Building and also reducing a little bit the anxiety that was around during covid, and that really got me hooked into, like more looking more into digital applications and gamification elements. There's so

Dom Burch: 5:59

many avenues we could already go down. Thank you. Thank you. So Alexandra, why don't you just give us a little bit of background to you as well? Because I guess your research focuses more on, well, the way I described, sort of person centered care and self management for chronic conditions. But perhaps you can explain the importance of of these concepts and how e Health Technologies support them.

Alex Dima: 6:18

I think my research is and Pamela's research are quite close in terms of the topic and the approach, because we are both health psychologists, and we're both interested in how people manage on their daily basis, with to keep as healthy as possible in the best condition, despite all the you know, all that life throws throws at us in different directions. And I think one of the interests in which we kind of got together, discussing and working together with Pamela is Asma and manage managing asthma, particularly in adolescents, and how people growing up and the relationship with their parents and with their family changes, and how also responsibilities, assumed responsibilities, or expectations of the other responsibilities might change, and how to make this transition smoother. We worked a bit on data from a European project on this, which was very, very interesting. Also, this is how I learned a lot about about parallels, great research. I've been moving about a bit in Europe with my research. So that's why I kind of, in my in my role in enable I kind of brought all this experience together, because I was so I studied in Scotland, and then I moved in England, Netherlands, France, and now I'm in Barcelona. And yeah, I was confronted with this experience that in each healthcare system, things are organized very differently. We seem like a like a small Europe, but it's so the diversity of how healthcare systems are organized and how each individual can find their way through their through this complex network and find the right people to speak to the right information so that they can cope with their very individual situation, even if we can label them there was, you know, Asthma situations or stroke or or cancer or other labels that we put on people's experiences to cope a bit with this, with this complexity, each individual has their own challenges and their own life situation, and sort of helping this sort of interface between your goals and Your hope to to manage your your health and what the healthcare system offers is pretty much, for me, the essence of this idea of self management. So it can, it can take different forms. And I think also the what, what Pamela was describing earlier, in many aspects, is also about, about self management and empowering people to deal with their situation better from a health perspective. And also, of course, this is one side, and then there's also the side of helping healthcare professionals interface better and communicate better with with different people, of with different situations, and find the right words in the very limited amount of time, face time in a way that they might have, or phone time you know, and provide the right link the right information. And also in terms of healthcare organizations, how healthcare professionals Communicate, communicate with each other, what are the protocols that could facilitate this flow of information better, so that each individual situation, each individual can find their way better in this often maze of situations and relationships and information.

Dom Burch: 9:29

And I guess, you know, been able to share best practice across Europe and across the world where you know, so here in the UK, we might be very, very brilliant at one thing, but we're missing something else. And actually what enable, I guess, is trying to do is, is put all of these different technologies and these platforms and the work that's going on into one place, into a repository that allows, well then to be put on a pedestal, to be showcased and to be highlighted, but also for each of those organizations to actually see what others are doing in different parts of Europe and learn from one another. Because it's. That sense of like a rising tide will float all of the boats. It's like there's opportunities aren't there here to share best practice, we're talking a minute ago about, it's not just about education, actually. That's one element of helping people be in charge of their own decision making, is to be informed. But actually, behavior changes. You know, that's a much bigger thing to crack, isn't it? You know, I used to work in road safety 25 years ago, and it takes a generation, sometimes for a behavior to shift to a significant degree, whether that's, you know, driving slower because of speed cameras or wearing your your seat belt so you don't, you know, damage yourself if you're in an accident. And when we look at something like asthma, you know, actually trying to get adolescents over here. We might describe them as, you know, I know the healthcare system doesn't like to describe them as hard to reach, but Sarah and I have this sort of conversation about, are they hard to reach, or is the health system actually difficult for them to access? And flipping that around. So just talk a little bit about some of the research you do around behavior, because I think that's really important, is it for people to understand what are some of the things that work, particularly when it comes to young people, in trying to encourage them to make those shifts of behavior that will help their own health or their well being?

Alex Dima: 11:14

I think what is, in a way, very interesting and very complex about about behavior change is that the reasons for a type of behavior or a set of behaviors, are so diverse and so individually specified. Let's say so for for someone, it's just that just it can be the lack of information that is exactly when do I have to take the medication, and how exactly it can take the medication, and do I get any feedback of that, and already with feedback on inhalation technique, with a clear explanation of, well, this is kind of what we need to do. Let's see what you can do every you know, every day for the next two weeks, and then we get back together and see what worked and what didn't work. This already, this is, of course, also more than information. It's also planning, and it's also getting planning for feedback. But it's it can solve a lot of issues already, a lot of difficulties that the people might have. And this is, for example, devices that measure how you inhale the user inhaler, and then give you some form of feedback. Of course, it needs to be reliable feedbacks, and then it needs to be very well clinically tested, so that the feedback does improve your your behavior and your your outcomes within a given amount of time. The and the usefulness of this, you know, short sequence in the person's care pathway, it's obvious to to many who test it and say, Yes, I didn't. Nobody told me until now that actually this is the way I need to take this inhaler. And by the way, I changed the inhaler, and this is completely different things. And I used to use this this, use it this way, and then I followed with my habits in the next device that I'm using. And oops, I'm not feeling well anymore. What? What do I do? So this sort of basic explanation is essential, and it's not still done in usual practice. So if we manage to do these general things that that's that's great. But then on the top of these basic things that would be good to do with everyone, there's the individuality of of the person, and there might be in the individuality of the person in a given time frame. So how would how I was my medication intake a month ago might be completely different now that something else happened in my life, that another responsibilities in the job, that the priorities change. You're a bit, you know, off the bike path, a bit for with your plans and with your with your intentions, and you need to go. You know that you need to go back when you're on track, and conversation around your particular situation is helping you get back on track, and you might move again in another direction in in a few months. Yeah. So this sort of continuity of care and follow up with your your own goals is, is important, and this is, I think this is one of the challenges, and we also see it in enable is the individuality public situation and the necessity of clinical care to to provide advice really tailored to the person. And then the aspect of research, which needs some standardization, for reasons of, you know, putting numbers on things and then calculating, and, you know, putting thresholds on, on whether it works or not, and then the balance. And also what, what our work is doing, and also what working enable is trying to promote, is to get the right balance between getting the right numbers, the evidence base of each technology, and allowing for clinical practice to be also an art, also human, you know, contribution and human connection that cannot be replaced by numbers. Yeah.

Dom Burch: 14:49

And when we spoke with Laura King, who's an asthma nurse, in our last podcast, you know, she was making the point that when she sits with the family, and it might be a mum, might be a dad, might be, you know, young person. Is to actually take the time just to be with them on a very human level, and to actually ask some of the really obvious questions that others might assume because this is somebody's had asthma all their life. Do you know how to use your inhaler? Do you know the difference between your inhalers? You know, when was the last time you actually used it? Do you want to show me how you use it? You know, these sort of things that that we can all as professionals just take for granted. Panel I saw you were itching to jump in there. What was No, no, what's your what's your perspective on what we were just discussing?

Pamela Rackow: 15:31

So I think I wanted to add to what Alex said, in terms of like, when we look at it from, like a health psychology perspective, and we compare that with research, not only in with people with chronic conditions, but also health behavior change in general. So this the idea with the small sequence is an absolutely brilliant idea in terms of, for example, what you could call empowerment of your patient, or what we also call, oftentimes, self efficacy. Because what we want is, we want participants, patients, to have like, we want them to win. We want them to succeed in something so starting with, like, small sequences and not overwhelming people, so that they think, Oh, okay. So I've managed this for the last two weeks, and it wasn't that hard, and I can feel some type of improvement is a brilliant first step. And then the other thing I was thinking, if that ties in with the idea of it needs to be personalized and it needs to be or your care or your attempt to change your own behavior needs to be personalized and needs to adapt to your current context. What we oftentimes call this in health psychology, is action and coping planning. And action and coping planning helps us in making to translate our motivation into actual behavior. And I think it's particularly interesting to use, for example, digital aids for that, because then you have, you can come up with your personalized planning, your personalized plans. So for example, personalized plans that we did with young people in our interventions was planning for having sleeping at someone else's house. Yeah, because and then sleeping at someone else's house. Totally different context. So as a young person, you go into a totally different context. There might be elegance and triggers around such as pet hair and things like that, and then you need to stand your ground and say, You know what, I can't sleep with the dog in one room. Do you have a room where I can maybe sleep without the dog and all these types of things, or especially for young people, unfortunately, still relevant, comes up in a lot of reviews that they feel a little bit embarrassed to take their medication in front of others, so that's something that needs to be accounted for and for all these like little situations and change situations, having a plan in place really supports taking your medication as prescribed and supports your behavior change. I

Dom Burch: 18:20

mean, it's really interesting you were just describing some of those concepts, right, you know? And I think about how we onboard people onto the digital health passport, and particularly around asthma, and we're beginning to move towards epilepsy and sickle cell and lots of other priorities, but particularly around asthma, once we've targeted that person. And actually, do you know the way we get them, one of the ways we get them is talking to them on Tiktok, on their terms, in language that they recognize, in an environment where they're already hanging out. If we can get them to download the app, and if we can get them to go through that onboarding process, actually it's already been shown. There's some good research from UCL partners that shows, just by going through the onboarding process, that young person already has a much better understanding that they have an asthma plan. They have two inhalers that they should be taking one of them at certain intervals. And even if we only touch them to that degree, even if we only get them to that point, their asthma score has already gone up a few notches. And imagine, once you've got them, if you've got a pollen trigger, I don't know, air quality trigger that they get each morning, something that is really tailored and useful to them, specific to them. And then you can start to introduce videos and other content and education. But even getting into that point, you know, they're seeing a benefit. I was just picking up on what you were saying, that small step benefit is going to encourage them to take more ownership. Then that that could be one of the links into helping get away from these sort of paper based annual reviews and all that. And then the other bit that I think is really, really interesting is this notion of having peer support. And it might be parents, but it might just be somebody else like me who. I know they know what I'm going through that has a sort of, I don't know, just a greater importance to that individual. So

Pamela Rackow: 20:07

I have a colleague also researching at the University of Stirling, and she does a lot in, like chronic pain, and they develop a lot in with, for example, peer mentors who also have chronic pain, and especially relevant for maybe that's a weird term, like older young people, like 16 onwards, especially because there are a lot of things that you might not want to talk with your parents, you might not want to talk with a healthcare professional, or you want to, like, test this idea with someone else first. So that's something that is definitely relevant. I think my vision has always been that this can be all integrated in one app. On the other hand, I also think from a practical perspective, it's a really, it's really a big task to make sure that young people are in a safe environment, because this whole peer idea also needs to make sure that there it's a safe environment. Now, the way how we and this is like back in the day with the WhatsApp groups, the way how we made sure that the WhatsApp group is a safe space for everyone is we had a confident in this group. So there was someone from the research team who making sure that everything in this group is, like, very supportive, and also had the task to send supportive messages, you know, so So on the one hand, I'm always someone who is absolutely thinking, okay, peer support is a really powerful tool, and at the same time. It only works within certain parameters, and you really need to make sure to have a safe environment and to also motivate people to peer support, because otherwise it just like deintegrates over time. So,

Dom Burch: 21:56

I mean, I can't believe it, we're almost already out of time. We've only scratched the surface, right? This feels like a podcast that we can keep going, and maybe we'll have to revisit. But this is a question for both you. What are some of the upcoming trends or innovations in digital health and and this world of martech that you're both excited about? What can you both see from your perspective that's coming around the corner or Or what is it that's exciting, that's sort of beckoning you toward it, that really is giving you sort of energy and motivation. For

Alex Dima: 22:25

me, what's the big challenge? And I think it's related to what Dom I was saying earlier. Can we have how can we strike a balance between the integration of technologies and tools that people can access to manage their health, and also to keep sufficient diversity, and also to keep everyone involved and engaged, also in terms of users, but also developers of technologies. And how can we in a market that is quite competitive and it's quite complex also for technology developers, how can we promote more collaboration, more going towards the common interests and strategically focusing on different areas and also on how to integrate? And I think to some extent, the Enable repository is trying to work towards that. It's, it's really, I see it as even after four years of developing and discussing with with people, and bringing people on board around this this region, it's it's still of, as they say, at the first steps of this process, what I think it's more than finding the technical solution, which is totally improvable. It's more the the network of people that share a common ground, and then know what these others are about, and how do they see the issue. The BG should hand and medication materials is one of many self management behaviors that we discussed here that are within care management of certain conditions and so on. So it's a, see it as a sort of concentric circles or or bubbles in a way, yeah. And I think this is, this is the main, the main, the main challenge, and I think the main thing that we need to bring our minds together and and solve or work towards, in parallel with the with individual solutions for different chronic conditions for different patient groups. And I mean, I think one of the things that I'm really happy to be able to have been able to achieve with enable so far, is that, you know, if you look at the Enable repository, the technologies that are there are provided by people that are sharing this vision, and say, Well, yes, it's worth spending time to figure out how to put this information here, to keep the website maintained, and also, not only the website or the network behind it, and how to get together to workload those tough issues that we are all concerned about

Dom Burch: 24:56

absolutely and Pamela, how about you? What the kind of things that. A from your vantage point, you know, you're sort of looking over the horizon and can see coming our way that excite you or motivate you, or that, you know, maybe are just opportunities for the digital health sector to do better.

Pamela Rackow: 25:11

I totally agree with Alex in terms of like collaborations, because sitting at a university, I really want collaborations with digital health providers with programmers, with people like you. So I'm really looking forward to have more of this. And I also think this is, like, beneficial for all sides, because there is so much knowledge in universities about behavior change and like, little techniques and things and interventions that you can do, and they are all very, very well researched. And I'm looking forward to seeing this more translated into a digital space. And like for example, your app makes a good first step into absolutely this direction. And this is something I really I'm looking forward to seeing more of

Dom Burch: 26:01

and actually that sort of tripartite collaboration between, you know, the sort of the commercial sector, if you like, the health system, and then the academic world, where that has to there has to be these partnerships where there is shared funding, a shared goal, and also, at the end of the day, we are trying to change behavior in A positive way, so the outcomes for patients are better in the context of there's less money around, right? I mean, you know the reports here in the UK of black holes, of billions of pounds, it's increasingly challenging to carry on trying to serve a population in healthcare, and also knowing that if you are able to intervene at an earlier point, and people are empowered, and they do change their behavior, and they can be educated, and they are able to track their symptoms, then actually that's going to lead to better outcomes and less interventions down the line. I mean, listen, we could go on for hours and hours. It's been absolute pleasure talking to you both genuinely. I hope that we can do this organizationally, that we can do this in person, and we can meet and we can share best practice and actually make those connections. Because the point of enable, as you've just said, Alex, is really not just about highlighting some of the technologies out there, but it's also about bringing together the expertise and sharing that best practice and actually learning from one another, so that we can all move forward faster. So if anyone's listening and they're interested in the Enable repository, as I say, it's aiming to promote collaborations for the continued development and adoption of these technologies, these medical adherence technologies. It's about European companies coming together. It could be technologies that include electronic devices that record medication intake, dose dispensers, mobile applications that provide health information and reminders. If that's you lovely listener, then do get in touch with enable. I'm sure if you Google Alex and I'll put all the links at the bottom of the podcast as well, then you can find out more about enable. But for the time being, Dr Raku and Alexander dematt, thank you so much for coming on the podcast. Thank

Alex Dima: 28:02

you very much for inviting us.

Dom Burch: 28:11

You've been listening to the up, up and away podcast from tiny medical apps. If you're listening and you would like to be a guest on a future podcast, please get in touch with us via our website, or you can find us on LinkedIn, or just Google DOM Burch and up, up and away, and you'll find us there for more information, go to tinymedical apps.com, you.