We have had 37 live chats so far and whilst this is not the last, we are now going to take a short break to give us the time to concentrate more on the data analysis from the experiments we’ve been running.
So don’t despair, we’ll be back soon, but until then I am going to leave you with a really good read, at least in my opinion, which sums up in many ways the essence and purpose of Nappy Science Gang.
Bella Starling, Wellcome Trust public engagement fellow, joined us for a lengthy chat to discuss the role that patients or other members of the public can have to help shape scientific research. In particular Bella is interested in what ‘ordinary’ people can add to a project, that scientists can’t, which is basically what NSG has been all about! So have a read of this blog for a discussion around the topic of citizen science and citizen led research, including a few tips on how to engage with the NHS and even how to get our NSG research published!! (eeeep, not excited at all!!)
Q: Hi Bella, could you explain to us what you do and what your job involves?
Bella: I work within an NHS Trust and a Uni to involve people in research – not as participants in research studies, but more as partners in research.
@Bella: What does that mean, ‘partners in research’?
Bella: There’s a big push especially in NHS based clinical research to make research more relevant to people by including them as partners – just like NSG is doing. Partners as co-researchers, co-applicants, trusted and (sometimes) equal contributors to research.
@Bella: What kind of research does that involve?
Bella: For example, a research group we work with carries out research into arthritis. The scientists include arthritis patients in writing grant application, thinking about what research question to address, involving them in research design – including quite applied research (like how to make an effective knee brace) or more upstream genetic research.
Q: Is that happening nationwide, or just in certain areas?
Bella: Nationwide – but can be patchy. Some places are really good at it, others less so. The NIHR National Institute of Health Research and INVOLVE are the two national organisations trying to make this approach more common in NHS research.
Q: What kind of backgrounds do the participants come from?
Bella: Any background. Usually researchers investigating a specific condition like to work with patients with that condition, but not always, and it can be really good to work with people from completely different backgrounds.
Q: You said there’s a push to do this, why is that?
Bella: Part of it is about making better research – by involving the people that research affects in designing the research itself, it makes the research more relevant; involvement can help with recruitment of patients to research studies; involvement can also help innovate research. Often, people/patients come up with some really great ideas that haven’t always occurred to researchers. Ultimately, I guess it’s about wanting to democratise research a bit more.
Q: You talked about the democratisation of research. But is there a risk that it’s not as democratising as you’d hope? Are the patients who have most input to research often white, male, educated, etc?
Bella: Yes, fair point, and there are quite a few approaches that are trying to be more inclusive (can follow up with links). But one of the things about working with people with conditions is that medical conditions don’t discriminate, so there is a wide pool of people to ‘choose’ from. Persuading them that they have a valuable voice can be hard though. Also, there has been a tendency to be quite conservative about patient involvement – having a ‘token’ representative on an advisory group etc, but people are experimenting more, including using technology and approaches like citizen science, which should hopefully reach a wider group.
@Bella: I think that’s great (expanding the idea of what patient involvement could mean). When I used to work in youth democracy I got annoyed by people saying, “oh, we have a youth member on X committee so it’s fine”. The young person on the committee may not be typical of all young people…
Q: What kind of problems do you encounter with this approach and how do you overcome them?
Bella: Often the main problem is with researchers who are reluctant to involve people, either because of time or because they’re not quite sure what it involves. I’ve yet to meet a researcher though who hasn’t valued the experience of working in partnership with patients/people once they have been persuaded!
And in terms of overcoming them, there’s more and more evidence coming out to show what the benefits are of working in partnership with public/patient contributors. INVOLVE is a good place to look for this type of evidence.
Q: We are interested in washing guidelines for cloth nappies and the NHS guidelines state that bio detergent should not be used. Consequently many manufacturers quote this advice, even though many users find that bio detergent works really well. How would the NHS have come up with this guideline and what sort of research would they have done before issuing this type of guideline?
Bella: I’m guessing that the NHS will have done some research to back this up, but I’m not the best person to ask about the type of research. It would be worth trying to find out from DH or whoever has published the guidelines about what research was carried out… and then present your NSG research!
@Bella: how do you find out who produced the guidelines though?
Bella: Might it be Health Education England or Public Health England – is there a logo somewhere?
Or it might be NICE (National Institute for Clinical Excellence) which does this for drugs and medicines.
@Bella: There’s this on the NHS Choices site, which just says NHS Knowledge Service
Bella: I just had a very quick look at this article – which references Cochrane. Cochrane reviews have quite an active patient and public involvement programme – it might be worth contacting them telling them about your NSG research and see what they say? They are constantly reviewing evidence produced by the research community to see whether we’re all still getting the best research-based advice.
@Bella: Thanks Bella! That’s really useful and I didn’t even know Cochrane reviews existed.
The only sort of concrete thing we’ve found is a paper describing several studies that showed bio detergent to be very unlikely to cause skin irritation, and information from manufacturers saying that bio enzymes increase cleaning power so less surfactant is needed. We haven’t found anything showing that it’s irritant. We’re not testing that, but it’s an area of interest and very relevant because one of our big trains of thought is about whether normal washing with effective modern detergent at moderate temperatures actually proves a very effective way to hygienically clean nappies.
It sounds like you’ve given some really serious thought to this issue and from the website I see that you’ve designed and carried out some experiments. What about asking one of the scientists who has been advising you about publishing your data with you? Lots of researchers are now including public/patient contributors as authors in peer-reviewed publications.
@Bella: That’s really encouraging that public contributors are being included as authors (especially considering how often within academia people who *should* be authors get left off publications! Would be nice to see a cultural shift there)
@Bella: For clarity, our experiments aren’t extensive enough to overturn NHS guidance! But from various experts we’ve spoken to, bio cleans better, and we’ve seen research papers stating there’s no evidence bio causes skin problems. And in fact the rest of the world doesn’t have bio vs non-bio, it’s just a weird quirk of the British detergent market.
Bella: No they’re probably not extensive enough to overturn NHS guidance, but they could be publishable, either as a ‘real’ scientific study or as a piece on how citizen science has contributed to this research area.
Q: Any suggestions where to publish as a citizen science project?
Bella: There’s a couple of new journals – Research for All and Journal of Research Engagement and Involvement that might be interested.
@Bella: This was one of my original thoughts when I designed the project. But that was when I thought we might do a study on amber teething necklaces. When we chose washing temperatures I kind of thought people don’t write papers about that sort of thing, but it turns out people do write papers about this sort of thing. And Mark and Adrian read them all 🙂
Bella: To be honest, it’s not my field, so I don’t know if people publish about washing temperatures, but I’m sure some of your scientific advisers would know better than me.
*Mark and Adrian are two chemists from the RSC’s water science forum who we got along for an early live chat and then kind of dragged them further into the project. They really know a lot about detergents.
Q: Mark* has written to the NHS asking what has advised the non-bio advice. It’ll be interesting to hear what they say. If the answer turns out to be “nothing much” I guess we could at least direct them to the things we’ve found.
Bella: I’d be interested to hear what Mark finds out. As it has been said, one study alone (led by scientists or not) is unlikely to completely overturn guidance, but making guideline-producers, decision-makers aware of what you have done would be a good first step.
Q: Going back to your work, is part of the motivation a sort of patient-as-customer ethos? It’s our NHS so we should have a say in what is studied? And if so do you come across any reluctance among the professional?
Bella: Yes, NHS based research comes from public money and therefore, in my opinion, should be accountable to the public – and one of the ways of being accountable is to involve us.
Yes, there is reluctance. But more and more people are doing it. I’ve had to persuade a lot of researchers to try it. And not one has not seen the value in it (eventually, in some cases!). If nothing else, research lacks a competitive edge now if it doesn’t have public involvement, and increasingly research funders won’t fund research without public involvement.
Q: Do you find that once people have engaged in research they stay committed?
Bella: Absolutely. A lot of people get ‘hooked’ on being public contributors to research and there are quite a lot of very experienced public contributors out there, and new people getting the bug all the time. Some people can be critical of ‘professionalised’ public contributors – saying that they then lack authenticity having been so involved for such a long time, but I think it’s a broad church with room for all!
Q: I’m really heartened to know that this is taking place. I think patients often know a lot more than medics about what little things *really* matter when it comes to living with a condition. An example would be my son and I have eczema and creaming a million times a day is the mainstay of the treatment but I just can’t believe my doc had the faintest notion of how life limiting that is to a parent/baby. So something like whether to apply steroid cream before or after a bath wouldn’t seem like big news to a scientist but would be power knowledge to a parent of a baby.
Bella: this is exactly the type of thing that I’m talking about. There’s more and more evidence of the value of ‘expertise by experience’ as you describe – I can follow this up with some places to find out more if you’d like.
@Bella Are there any bits of the baby advice we get from the NHS which have been advised by research with public/patient contributors?
Bella: I’m not too sure about specifics. I’m sure that there will be groups involving patients/public in this research area. Again, it would be worth quizzing the guideline producers about their evidence for their guidance, and asking them if the research was co-produced with users.
Q: Could you tell us about any interesting new things that have been discovered or examined thanks to public involvement?
Bella: An example I used the other day is a pharma company (surprisingly) working with HIV patients. The patients, through their experience of their existing drug regime, proposed that a different therapeutic dose should be included in the clinical trial (the company weren’t intending to include that dose). After all the research that was done – this was the does that was authorised and put on the market. Another great research question came from one of our arthritis public contributors the other day. She’d been invited to a talk on biological clocks (all about how our cells have intrinsic molecular timing mechanisms controlled through genes) and she asked the researcher how this made a difference to what time of day she should take her arthritis drugs. He didn’t know. He’s going to team up with her to put in a grant application now.
@Bella: Those are brilliant examples. I think that with the Internet allowing people to connect and share experience about dealing with health conditions there is probably a rich mine of things that patients already know or at least believe to be true which could inform really helpful changes in practice with a bit of research to back them up.
Bella: Absolutely. It’s really interesting to see that the pharmaceutical industry is cottoning onto this as well – patient experience as a way to innovate.
Q: What sort of challenges are there in involving public/patients in research? What are we normal people rubbish at?
Bella: A few, not least reluctance on the part of some researchers and mainly this is because of the perceived time and logistics of involving people. Again I can point to some links, but I’ll leave you with the sentiment that even though there are challenges (and there are) those that have been persuaded to do it (in my experience) are always grateful to have done it.
Q: One question I had, and I realise this is probably way out of your area, but we are coming up with washing guidelines for washing cloth nappies. We will get that info out through existing networks like nappy libraries, but a lot of people never contact a nappy library. Everyone sees a health visitor and a midwife though, most people get a Bounty pack. How might we go about trying to get our info to the right people in the NHS to pass it on to people who might need it?
Bella: Ooh er, now you’re asking! Possibly it goes back to one of the original questions – finding out who writes the guidance and contacting them. It seems that you have good links with manufacturers and/or retailers – perhaps they could include some info?
I think Bounty is separate to NHS. It might just be worth phoning DH and asking them which agency/arm of the NHS is responsible for this. Or what about contacting the Royal College of Midwives? Bit of a long shot, but local Clinical Commissioning Groups might be worth a shot too.
@Bella, what are local clinical commissioning groups?
Bella: Clinical Commissioning Groups are groups of General Practices that work together to plan and design local health services in England. They do this by ‘commissioning’ or buying health and care services. What about the Institute of Health Visiting?
@Bella, we should definitely contact the Institute of Health Visiting.
A massive thank you to Bella, we’ve learnt loads! it’s been a great insight into another side of the NHS!