Celebrating 10 years of helping patients share their experiences

Celebrating 10 years of helping patients share their experiences

Health

17 Mar 11

An award winning patient website based on research carried out at Oxford University has celebrated its 10th anniversary with the launch of information on one of the most deadly cancers of all.

The experiences of patients suffering pancreatic cancer, and those of their carers, were made public at an event in London on Tuesday celebrating www.healthtalkonline.org which is run by the charity DIPEx, the Database of Individual Patient Experiences.

Together with www.youthhealthtalk.org the site sheds light on more than 60 diseases and health concerns. Its success has far surpassed the expectations of founders Dr Ann McPherson CBE, a GP and Fellow of Green Templeton College, Oxford and Dr Andrew Herxheimer, a clinical pharmacologist and Emeritus Fellow of the UK Cochrane Centre in Oxford.

‘It’s been much more successful than we envisaged,’ said Dr McPherson, who has contracted pancreatic cancer after suffering breast cancer 15 years ago. ‘We’ve raised more than 8m in donations and grants from the Department of Health, voluntary organisations and charities.

‘The sites are being used by patients and carers, for the teaching and training of medical students. It’s an amazing resource of what patients want.’

The two websites provide first-hand accounts of the experiences of patients and carers in video and written form. The ideas stemmed from a quest by Dr McPherson, who then was suffering breast cancer, and Dr Herxheimer, who was about to have a knee-replacement operation, to find out more from patients who had undergone the same experiences.

Dr McPherson adds: ‘It’s important that patients get better information and our websites are one way of giving it. When you have an illness, you are interested in how others coped with the same problem. A lot of people don’t want formal help like focus groups but to be able to access other people’s experiences.’

The initiative developed rapidly and a team of 14 professional researchers is now employed to interview patients all over the UK, recruited by GPs, hospital doctors, specialists and members of support groups.

‘It’s important to make sure we have as wide-ranging a sample of people as possible for each disease,’ Dr McPherson says. ‘We didn’t want just white, middle class, 50-year-olds.’

Around 250 people attended Tuesday’s event at the Museum of London including Health Secretary Andrew Lansley, the Cancer Czar Professor Mike Richards, DIPEx Chair Jenni Murray and the actor Hugh Grant, a charity patron who provided the funding for the work on pancreatic cancer.

Dr McPherson heard Grant talking on the radio about his mother who had died from pancreatic cancer and wrote to him seeking support. ‘I was very impressed by what he said and asked him if he’d be interested in helping. I didn’t ask for money but six months later he contacted me saying he lived a chaotic life and had just found my letter. After meeting him, and various negotiations, he decided he was going to fund the whole section.’ The actor and Dr McPherson have contributed their experiences of pancreatic cancer to the new section of the website.

DIPEx now has an international arm with patient experiences publicised on similar websites in Australia, Japan, Israel, Korea and several European countries. ‘It would be exciting to get the US on board,’ Dr McPherson says, adding that the charity is also hoping to replicate its work in developing nations where the widespread use of mobile phones would give people ready access to health information.

The Oxford Health Experiences Institute is a more advanced DIPEx project and is being formed jointly with the Department of Health, Oxford University’s Department of Primary Health Care in the Medical School and Green Templeton College. The aim is to establish a centre of excellence within the university studying patients’ perspectives of illness globally.

Oxford University researchers Alison Chapple and Julie Evans conducted the pancreatic cancer research and say that the value of the patient experience website is particularly clear with this type of cancer.

‘The experience of having pancreatic cancer is rarely discussed,’ Dr Chapple says. ‘Some people diagnosed with the disease have never heard of the pancreas or don’t know where it is.’ The volume of information patients sought varied, the researchers found. ‘Some reacted by sorting out their affairs or tidying up their possessions while others decided to carry on living as normally as possible.’

Dr McPherson credits the patient contributors with the success of her ventures. ‘I’m really grateful to the 2,500 patients who have given their stories. They have been fantastic in sharing quite intimate details of their lives to help other people.

‘The new section of the website is ‘very exciting for me, having the disease myself. I didn’t think I’d be alive to see it launched.’


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