'There’s greater recognition of the therapeutic power of online communities'

I was struck by a quote you used in the title of one of your recent papers about online support in health… 'I found it the only place that spoke the same language. ' Do people in these peer communities tell people what they need to hear, or what they want to hear?

Both, and also things they might not want to hear! Some people will tell you what you want to hear because you've asked a direct question. Some people will give you advice, which you may or may not have asked for, but they think that's what you're trying to get at. 

That can be helpful, but sometimes people can just share quite blunt perspectives on their experiences and/or how that might apply to you, and that can be quite hard to take for a whole host of reasons. It can be a blunt place – it's all online and people sit behind screens, so the normal rules of conversation and polite interaction can be stripped away. Not always, but you can get that.

Have you done research on how people enter and exit these communities?

Yes. There are a whole host of questions around every part of the process – what gets people through the door and into the room, what allows them to stay, or to leave out of the other side. We know quite a lot about what people do in the room… we know less about why people go through the door and why they leave.

Effectively, people join online health communities for two reasons: to find something out or for emotional support. Through a social support lens, it's usually one of those two things, if not both. But if you look at it more broadly, it's often about stigma. 

You might not want to tell your mate you're scared of dentists, but you might go online. There can be anonymity as well, and there's a real convenience factor – you can be sitting on the bus on your phone, and nobody knows you're in an online community. How long you stay might depend on your needs. If it's a bit of information and somebody gives that, you may stay, or you may just go. 

But if it's something emotional – and a lot of long-term conditions are – you might stay for a lot longer. The illness isn't going away, nothing's really changing, so it's all about how you can manage how you feel about it.

Do you take a view as a researcher on the quality of the information within those communities?

When I first started this, 20 years ago, the literature basically said 'the internet is awful', therefore online communities must be awful. You're replacing human interaction, it's really addictive, or you'll just be fed a whole bunch of information that could be medically dangerous. 

That was the flavour of the early literature – but it's not been borne out over the years, in studies that have looked at the accuracy or conventionality of medical information exchanged online. A lot of the bigger communities, or those that might be signposted by health professionals, are moderated – wrong information is stripped out. Sometimes there's a lot of peer correction, too.

But there is a big question mark over how you actually assess the quality of information… there's been next to no big studies on that. We have a postdoctoral fellowship down in Exeter, Bethan Treadgold, who is working on quality assessment of online communities. There's such a big repository of information and advice that needs some level of checking or validation.

I would imagine some health professionals are all for these communities, and some against?

Yes, health professionals are in very different places around what they see as the value, and it's hard to work out who's who… there seem to be a whole host of things that drive that, it's not necessarily a length of experience thing.

The work we've done, though, has shown that an online community can help people learn more about the condition, so that when they go to the next GP or hospital appointment, they've got a bit more awareness, they're armed with the information and they might have rehearsed questions. Sometimes, around conditions that people can experience as more 'contested', it's more about rehearsing how to argue your corner. And some GPs will go 'that's great that you've taken ownership'. Others think 'that's challenging my authority'.

These medical consultations can sound like a fight, can't they… a war. It shouldn't be like that.

You can imagine, though, for some conditions…

I've done work in endometriosis, and that is often an eight-year battle, and it is a battle. You can understand why patients are quite desperate to get to the point of diagnosis. They can take what they've read and discussed online, and they're trying to participate and move things forward.

But I think the tide is turning. Say you have some type of mental health challenge and you're on a waiting list for a talking therapy. Some areas will now refer you into an online community as an interim treatment option. That's a greater recognition of the therapeutic power of online communities. But that's taken… you know, it's 2024…

I'm interested in that because back in 2018 one of your many collaborators and friends, Karen Rodham, wrote for us about self-management, as overrated: that the practice hadn't really delivered on the promises of the data. Do you think that's changed since then, in terms of the patient 'participating in the process' as you say?

From my perspective, yes. Charities, as support organisations, are being much more active in the peer support arena. There is more of a recognition that self-management is one part of an armoury of strategies. It's certainly not the only thing in how I approach health, but it has a place.

What do you think is underlying your whole approach to Psychology?

Oh, wow. I'll have to think about that for a minute! I don't want to waste my time or anybody else's time on things that actually have no application. So that's always underpinned what I do, I guess.

And what's underpinning that?

When I first started thinking about Psychology, I was 14, and I just equated it with being nosy – observing people, and understanding them. Then late in my undergraduate degree, Marie Johnston pitched up to do a third year option, and suddenly the pennies started falling into place. I could just see the application.

The interface between real world suffering, misery, illness, struggle and health psychology. I've always been quite a socially awkward person though… I don't really enjoy chit-chat and big groups of people. When everything went online, I suddenly found my place.

I just really like the technology side of it… you can do Psychology without ever having to sit and speak to somebody! But then it wasn't until 2002, 2003, that peer support became my area of interest. I was really ill. To this day I have no idea what it was, but I was properly ill and there was a question mark about whether it was going to be something much more serious. I was stuck at home, lying on the bed with a laptop, and I was Googling. 

This was pre-Facebook, there hadn't been a single paper in health psychology about online communities, but I went online and found all these people that were sharing really personal stuff about their health and their symptoms with complete strangers. These people were all over the place, geographically, no chance of meeting each other, but they were properly out to help each other. That blew my mind. I couldn't figure that out: why would you? Then it suddenly dawned on me… why wouldn't you? It's a safe space.

When I eventually got back to work, I took a bin liner, got my shelf with all my research, and it all just went in. I started again on a completely new pathway – online peer communities. Because they helped me.

I've known you, I think ,since PhD/PsyPAG days, and what defines you for me is connection and compassion. I see what you're saying about being socially awkward, but when you do connect with others you're really there for them. It sounds like that's what you found in those communities when you needed it.

I think that's probably a fair point, actually.

You've looked at so many different conditions in your research. Is there any kind of condition you're particularly drawn to in terms of the need to understand and intervene?

Gosh, you've been doing your research, haven't you?

No – I've literally just looked at your publication list on your department web page!

You're absolutely right, though. Working in the medical school, people are defined by conditions a lot, but I've never been like that. I was more interested in the process. What are the mechanics of this? Why are people doing what they're doing? So I've tended to float around conditions, but I've really enjoyed and found value in the conditions that are a bit more stigmatised, and perhaps less visible. 

Dental anxiety with Heather Buchanan, irritable bowel syndrome, HIV. A lot of what I've done has also been through MSc projects and PhD students, driven by their interests as well. Or a charity might ask us to do some work on their area.

So it has often been opportunistic, but I'm going down a more specific path now, starting to consolidate. Life experience has always influenced my research decisions. I was ill and I changed direction. Now, at my time of life, I'm in the dementia place. This is my non-academic life, as a carer, living and breathing dementia. My research is now partly seeking to understand what's going on with family members.

It was quite surprising to see so little on peer support and dementia. There are a lot of people suffering in silence. So I've become a bit more focused because of that, but I'll never truly just do one thing.

You've always done stuff on using the internet as a research tool in Psychology as well. You were an early adopter. Just before I started as editor, in 2000, there was an article in The Psychologist called 'The internet: A possible research tool?' Do you think it is actually being used to its full potential in Psychology?

When I first started in online peer support, there were no BPS guidelines for internet-mediated research ethics. That didn't happen till 2013. I had over a decade of nothing! But now, you see the internet really dominating as a data collection tool. 

The pandemic pushed it even further, but it was already the direction of travel for a lot of researchers. There's a whole host of reasons for that – resource mainly, but it's such a convenient and accessible tool. It's always adapting.

And adapting in the sense that politics, social media and health seem to be becoming more intertwined by the day.

Everything is interconnected. When I first started all this, everything was quite compartmentalised. Social media has allowed a lot more interconnections, in how these things play out. And that was needed – you can't sustain the 'research here, policies over there' approach. There's a lot more to be said and done around translating all of this to have a policy impact. This has got to start making a difference – I don't know if my work has or hasn't. There's always so much knowledge you can generate, but you have to do stuff with it.

But you're in a good place with your research?

I always feel, and I still feel, behind the curve. Just as I got my head around one question and how to approach it, the field has moved on. It's the next thing, the next thing. You just get your head around online communities, and then social media comes along, and it's 'Oh, now the communities there'. Then it's WhatsApp. Constant new platforms and iterations of how peer support might play out that you've got to keep on top of.

So, yes, I am in a good place in research. I wish there was more time and more resource, of course, but I think there's more that can be done with online peer support as an intervention that is cheap, cost-effective, and accessible. Certainly, in the UK and Western Europe, we're at the point where the majority of people have good internet access, and we can deploy online peer support as an intervention tool. We've done the research, and there's a lot of good can come out from it.

Are there still important questions for you?

If you were developing a new drug treatment, you'd want to know what the potential harms were, and how they can be mitigated. It fascinates me that we don't know much about that in terms of online peer support… the benefits seem to cut across conditions, but the risks seem to be a bit more condition-specific, which is intriguing.

But we certainly have a lot of evidence now around the benefits, and I don't think you need RCTs to demonstrate that. If a participant says 'this just really helped me', what more do you need to know?

It helped them, and it's their experience that counts. Yes, there are pockets of uncertainty, and no doubt a whole new bunch of questions coming round the corner. But overall, the field is much more evolved, and it now needs to be implemented in policy.