DIPEx International and the UK DIPEx team were discussed in the House of Lords yesterday during a debate about the NHS and healthcare data. Lord Stone of Blackheath said: “My Lords, when speaking of data in research, scientists and medics refer only to quantitative research, as has been done in this debate so far. But qualitative research also produces immensely beneficial data. I declare an interest as former chair of the UK ground-breaking healthtalk.org organisation. It has created a platform presenting thousands of free-to-access video and audio clips, drawn from rigorous qualitative research, to help people learn about their condition, manage their own health and make decisions about their treatment. Helping patients to find out what it has been like for others who have faced the same health conditions as them has been one of the most transformative aspects of the internet. But people worry whether the information they find online is reliable and need healthcare professionals to guide them to reliable sources of peer information online. This qualitative data is used to teach medical students and nurses about what matters to patients and to help design services that meet the needs of all concerned. In line with the Department of Health’s expanded focus into social care, a new platform, socialcaretalk.org, is currently being developed, which will include hundreds of interviews with people who have experienced social care first hand.
Healthtalk.org is run by a charity, DIPEx, in partnership with the Health Experiences Research Group at the University of Oxford’s Nuffield Department of Primary Care Health Sciences. Rigorous qualitative research methods are used to collect interviews with patients on film, which are then analysed for themes and turned into a multimedia resource that is widely used by the general public and health professionals. Evaluations have found that users of the platform report better understanding of their own health and greater confidence in talking to others about their health, and feel more inclined to take an active role in their own healthcare. Site users say that they find information on the website that they have not found elsewhere and answers to questions that they would otherwise have asked their healthcare professional. A third of respondents stated that the information on the website had reduced their need to make an appointment with a health professional. More than half the UK population uses the internet to seek information about their health. Healthtalk.org was used almost 6 million times in 2017, and the website covers more than 100 health topics. The work of the team in the UK is being replicated around the world by 13 other member countries across Europe, North America, the Middle East, East Asia and Oceania, which have joined the DIPEx international collaboration. These sister international group websites are creating and developing together, and the qualitative data produced spans 11 languages and 42 health conditions. Including the UK’s healthtalk.org website, 140 conditions are covered, with well over 120 publications in peer-reviewed international journals. These publications are based on thousands of hours of audio and video records of interviews and are a valuable qualitative data resource. These outstanding results depend on funding from charities, philanthropic donations and government bodies. I ask the Minister and his team to recognise the power of patients’ stories and experiences and how they can be used to provide not only information and support for people with health conditions, their families and carers but reliable resources of knowledge and understanding for those institutions that will train our healthcare professionals in the future.
They must be well funded, and qualitative data must be valued alongside quantitative data in the health service.” The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord O’Shaughnessy) (Con) said: “The noble Lord, Lord Stone, gave the example of how healthtalk.org—I think that is the right name—is empowering self-care in improving outcomes. He also brought to life an international dimension: sharing data not just in one country, but across the world. That is really important for rare diseases. Our health charities have a very important role in this field, as he exemplified.”