Taxpayers in the UK fund the NHS but are rarely asked directly about how the money should be spent. A few years ago local patients with diabetes were asked what our diabetes centre should do if for some reason they were bequeathed a pot of money. Options included screening for diabetes, treating obesity, early detection of complications, increasing the number of doctors and specialist nurses, reducing waiting times, or providing better car park facilities. The overwhelming “winner” was to spend the money on clinical research even if this meant rationing other aspects of the service (Practical Diabetes International, June 2000).
This enthusiasm by patients for clinical research does not appear to have been appreciated by the NHS. Just recently the results of a “mystery shopper” investigation by the National Institute for Health Research (NIHR) have been published. This involved visits to 82 hospitals to find out whether patients have easy access to information about clinical studies being undertaken and how they can become involved.
Depressingly most hospitals did not provide information about clinical research within patient waiting areas or hospital entrances, and almost half said that “they don’t do research” despite clinical research being “enshrined in the NHS Constitution.” NIHR clinical research network’s chief executive, Jonathan Sheffield, commented—“82% of the public think it is important for the NHS to offer patients the opportunity to take part in clinical research, but all too often patients who ask hit an information brick wall.” Following on from the mystery shopper findings, the NIHR clinical research network plans to launch a resource pack for trusts, offering materials to promote research opportunities to patients.
An alternative method for increasing direct engagement with the public might be to use the power of social media to advertise local research activities, but this would mean allowing more NHS Hospital Trusts to use Facebook, Twitter, You Tube etc.
Given the results of our patient survey mentioned earlier, clinical research could even be “crowd funded.” With crowd funding a network of interested individuals (e.g. patients living with diabetes or another chronic disease) pool their money via the internet to support efforts initiated by other people or organisations. Examples of crowd funding include raising money for disaster relief and supporting political campaigns. Crowd funding can also help start-up companies by offering small amounts of equity to multiple investors. Crowd funding companies companies such as Kickstarter have reported pledges from more than 2.5 million people raising $350 million dollars for more than 30,000 non-medical projects using this approach.
So why not crowd fund clinical research in diabetes? The study question would be created and funded by those living with the disease and they would have a vested interest in making sure the project was successful in delivering meaningful results. This approach just might result in more outcomes that are understood and matter directly to people living with the condition on a day-to-day basis, but it will have the potential to disrupt the research agendas of the established players and that just might be a step too far!
David Kerr wears many hats, sometimes at the same time—diabetologist, editor of Diabetes Digest, researcher, and founder of VoyageMD.com, a free service for travellers with diabetes. You can follow him on Twiitter (@GoDiabetesMD) and Linkedin. He holds a small amount of stock in CellNovo (a new insulin pump company) and Axon Telehealth.