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Peer-to-patient support

Terry Gault provides the patient perspective on how social media can aid in self management

A laptop with a red cross sign on the screenI recently spoke at a Digitas Health conference, Think Digital 2010, on social media, representing the 'patient voice' to an audience of pharma professionals. June Dawson, head of Digitas Health London, gave me carte blanche to tell it from my perspective: "his audience genuinely wants to get into social media and deliver what patients want," she said.

In 2003 I developed a permanent raging thirst and felt unusually tired, but I was quite happy to put it down to having quit smoking. Then blurry eyesight drove me to see a GP. I was simply told I had diabetes and to go straight to A&E. I spent five days in hospital as tubes pumped insulin into me to control apparently very high blood sugar levels. Others pumped in fluids to bring me back up from the dehydrated 8 stone or so I'd become.

I wasn't told much at all. On the fifth day the diabetes specialist nurse turned up with a pile of leaflets, including a diet sheet for a healthy heart, and handed me an insulin injection pen. Screw on a needle, stick it in your tummy and shoot. Once I could do that, the tubes could come out and I could escape home.

It's wonderful the effect being stuck in a hospital can have. Within two minutes I had transformed from a needle-phobic into an accomplished injector.

Believe it or not, this is about the level of education many diabetics — type 1 or type 2 — have traditionally received. "Oh you've got diabetes, here's a bunch of leaflets, come back in six months" is par for the course.

Ignorance is not bliss
Back in 2003 when I was diagnosed, I didn't know any other diabetics. I didn't know how I had become one or what was going to happen next.

The vast bulk of the UK's 2.5 million diabetics are probably content to leave it at this level of blissful ignorance. As long as they're not in agony or turning a funny colour it can't be too serious and the doctor will keep them right.

This is where I became part of the minority. My understanding of diabetes management came from the internet. But not from the official medical and charity sites trotting out the same vague generalities as all those leaflets: it was on the newsgroups that I found real people who lived with and understood the individual nature of diabetes management. It was because of them that I changed my insulin regimen to one that was actually appropriate. They also helped me discover that, directly contrary to medical advice, it did make sense to manage carbohydrate intake as part of controlling blood glucose, and that I could adjust my dosages to match what I was eating.

I found a UK diabetes peer support forum that wasn't too busy and seemed friendly enough, so I tentatively joined up. In doing so I became aware that the little knowledge I'd picked up to date actually seemed far greater than that of the bulk of the often baffled, bewildered and distressed other members. I found myself pitching in my own nuggets of experience on a regular basis.

With genuine experiences being shared and an increasing rate of message exchange, the forum membership rose exponentially. It was easy to see that by sharing experiences and pooling knowledge, people were experiencing genuine, measureable and often dramatic improvements as they gained insights and confidence.

Community support
When the forum owner decided to pull the plug, I felt passionately that the community shouldn't suddenly be broken up. Patti Evans and I decided to start in order to build a community with the same uniquely friendly, supportive and not always too serious atmosphere.

Suffice it to say that just over two years later we have 1,100 members who have posted more than 55,000 messages. We are consistently getting more than 6,500 unique visitors a month, between them looking at nearly 100,000 pages.

Perhaps the first issue was setting the tone. We insisted from the outset that it would be friendly, supportive and non-judgmental. This was done subtly and largely by example, with prolific poster Patti at the forefront.

Making it work
The moderator group and those subsequently invited to join were deliberately chosen not for any great knowledge of diabetes, but for their basic common sense, calm friendly attitude and for being around regularly.

It also turned out that they helped steer the evolution of the forum. We never set out to meet any need other than to allow users to be responsive to each other's questions and comments.

But that lack of any other agenda — such as representing a charitable, official, commercial or promotional interest — also meant that the medium itself was flexible enough to develop in response to member demand.

For example, from the membership, and particularly the core group, came the request for a real-time chatroom for even more immediate and less formal interaction, and for a largely social presence in the virtual world of Second Life. Both these ideas were implemented quickly and are now very successful "satellites" of the forum proper. We have blogs and a reference section with most-asked-for information, including a 'carb-conscious' cookbook of members' shared recipes.

Another decision taken right at the start was that we would be — and would be seen to be — totally independent of any outside interests, whether directly or indirectly commercial or promoting any particular dogma. We have no advertising or sponsorship: the first of which could imply endorsement and the second of which could impose an implicit obligation — on the forum administrators at least — not to upset the sponsor.

For some income support we did set up an intermediary link to a range of mainstream internet retail sites whereby we get a small commission on anything bought. It's transparent and brings in a trickle of funds when people choose to use it. Being seen to be beyond external influences is important because diabetics have more than a few reasons to distrust information sources.

It may not fit with NICE guidelines on patient involvement, but in my experience most diabetics are treated like mushrooms: kept in the dark with the tablets-of-stone one-size-fits-all NHS advice thrown at them by GPs who don't have the time, in-depth knowledge or inclination to explain what's happening, and who operate in eight-minute appointment slots, to targets and with PCT accountants breathing down their neck.

The value of forums
Forums don't claim medical expertise. They share collective knowledge and experience of making self-management work in practice. In forums that are well managed and without an underlying agenda, the cream — those members with real insights, analytical skills and experience — will rise to the top and their genuine knowledge will filter down through the membership.

So it is that members will arrive seeking help, will learn, will show huge improvements in their control and will often hang about to share how they managed it with those coming after them.

Most members arrive via a search engine, looking for diabetes advice. Others arrive from other forums and a few arrive through word of mouth from other members. The reality is, however, that in the real world diabetics know few, if any, other diabetics.

I believe that frontline healthcare professionals, even if they get past stereotypical assumptions, often judge the quality and reliability of the information presented against their own criteria. The users look at it in a much more open-minded and holistic way, considering aspects such as the sense of community involved, the level of understanding and support, the style of interactions and the practical usefulness of the shared experiences.

And research suggests that forums like ours really can help patients and healthcare professionals. The Digitas Health research findings, presented on the same day that I spoke, were a wake-up call to pharmaceutical companies to start communicating in these channels, particularly since 32 per cent of patients in Europe expect their online communication on health related matters to increase over the next 18 months.

Our forum is made up of motivated people who are each steeped 24 hours a day in understanding their own condition. Put together hundreds of practising diabetics on a forum and that becomes a formidable knowledge bank, accessible 24/7/365.

Shared understanding — of their condition and treatment, about effective use of the healthcare system and about the information sources available — in itself regularly brings dramatic improvements, far beyond what the NHS advice has managed. But members also gain self confidence in problem-solving through peer support.

All of this can raise interaction with receptive medical teams to a completely different level by, for example, knowing the right questions to ask at the right time, understanding potential changes to treatment plans and simply by being more informed and engaged in the daily management process.

In short, forums can go into areas of education, support, empathy and critical evaluation of treatments that the NHS simply can't.

Lessons for industry
The pharma industry must start to listen to forums and hear how ordinary patients understand and manage their condition, their needs, their frustrations and their aspirations. This has the potential to inform the effective delivery of health services, particularly by grasping the complementary nature of what's on offer and how that may be embraced rather than rejected or controlled.

But that takes an open mind. To any vested interests I'd say "look, learn, but don't touch" unless you are sophisticated and humble enough to realise that any preconceptions or private agenda will be rumbled.

You are in the company of the real experts in individual diabetes management in the real world. They are experts because they need to be. To them it's not academic. It's not political. They don't close the file at five o'clock and go home. Their lives really do depend on it.

Terry Gault
The Author

Terry Gault has had a career in full-time and freelance journalism including roles on Money Week, the Sunday Times and the Independent. He has built and managed numerous websites, combined with writing, sub-editing, editorial consultancy and childcare. Terry was diagnosed as a type one diabetic in 2004 and co-founded the forum in 2008.

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30th June 2010


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