Health & Science blog

Dr Ann McPherson saw the need for DIPEx – now called Healthtalkonline- not from the doctors’ chair, but from the patient point of view. “Basically, 15 years ago I had breast cancer and although I’d been a GP for a long time, what I wanted was not to hear glamorous or extraordinary stories – you know, climbing Mount Kilimanjaro or whatever – but just the great variety of ways in which people dealt with things. I got talking to Dr Andrew Herxheimer – and he had just had a new knee. Well he was also a doctor, and knew a great deal about medicine and the way the body worked – but he wanted human stories as well. You want to know how other people with this are doing. And we thought – how can we get this working? How can we do this?”

They knew they wanted to create something that was research based, and so the first thing they did was to devise a questionnaire to find out what kinds of experiences people had and felt were important. “It turned into a patient satisfaction questionnaire, though” says Dr McPherson – “and the problem was that if you give people some lines to fill in about what happened, they don’t write in them. Whereas we found, if you talk to people, you get so much more. We simply got people to sit down and would ask them: tell me your story.”

They found in order to get a good sample of people they needed at least 40-50 people. “At this stage, the web was becoming more and more obviously useful and we felt that web based video was going to be the thing of the future. And we also thought it was the ideal way to hear people’s stories about illness.” They started applying for funding, which started off with a grant form from the Consumers’ Association, but after this, further funding and ethics committee approval took just over a year.

Dr McPherson took a sabbatical from her day job as a GP in order to kick the project off. The first project they worked on related to prostate cancer. “We had fifty men from all over the country” she says, “with different backgrounds, experiences, disease stages and we could sort the dialogues into 25 key themes – like getting a diagnosis, making treatment choices, telling your family. We put a summary of each theme on the website, illustrated with a mixture of clips. Now we’ve got 52 sites on different conditions, a research group of 12 and the site is used for teaching and training, from medical students to doctors and other health professionals.” And aims for the future? “Well…there are over 3,000 diseases, excluding the rare ones – we’ve got 52, we want to do another 50 in the next few years and it all has to be updated all the time.”

What I like about Healthtalkonline as a doctor, is that I know that people will be free of hearing dramatic stories, calls to battle against disease, or other emotive guilt-trips that I would never like to visit upon my patients. Dr McPherson knows what I’m talking about. “Yes, support groups are not for everyone, nor is the battling disease mentality. I certainly don’t like that approach – now that I have metastatic disease, I don’t feel, and don’t want to be made to feel, that it’s my fault.” Instead Healthtalkonline is honest, but sensitively so and makes clear that it is trying to represent a breadth of experiences.

What is she most proud of? “Patients like it. Many people tell us that they find it useful and very different from what is out there. People give tips on how to manage things, little things that you might never be otherwise told – for example, someone who had lost his speech because of motor neurone disease recommended having different sized whiteboards to write things on for different places – e.g. a small one for the bank to help privacy.”

She is twinkling as she speaks: this is the kind of making a difference she clearly loves. And the future for Healthtalkonline? “We’re desperate to do a site for asthma, chronic obstructive airways disease, and multiple sclerosis. But fund raising…well, it is a struggle.” Considering how common and often life impairing these disorders are, and what an invaluable resource the website is, it is a desperate pity that they are not given the same rank as other similarly disabling conditions. Fingers crossed for 2010.