Patient driven medicine

19 April 2013

The internet has changed nearly every walk of life. Eight out of ten people now book their holidays online and 40 per cent of internet users access online banking once a week. Social media is now a worldwide phenomenon with over a billion people regularly using Facebook, while Twitter has over 500 million registered users.

Healthcare has already been changed by the internet. In the UK over 50 per cent of people go online to seek health advice before visiting a GP. NHS Direct’s website has grown from 1.5 million visits a year to 1.5 million visits a month. Online ratings of healthcare providers are increasingly common and popular, and have started to look beyond whole hospitals to individual doctors and specialities.

Social media in particular has the potential to be a major disruptive force. Patients are increasingly hungry for information about their condition and to take a more active role in their health. Peer-to-peer websites, where patients share their experiences of their conditions and different treatments, are becoming more popular. In the United States one in four patients with long term conditions now look online for patients with similar conditions. PatientsLikeMe has been one of the pioneers. Set up in 2004 by three MIT graduates, the website now has nearly 200,000 members and covers 1,200 conditions. With the onset of long term conditions, rising patient expectations and an urgent need to extract value from healthcare spending, social networking has a key role in the future of healthcare.

Better evidence on what works in healthcare (and what does not) will be one of the major ways health systems can get more value for patients. PatientsLikeMe and other websites are now leading the way in changing how outcomes in healthcare are measured. Through capturing the insights of patients who use treatments, social networking is creating an alternative to the randomised, double-blind clinical trials that are the mainstay of the pharmaceutical industry. This not only allows us to better understand the benefits that matter most to patients but also provides a dramatically more cost-effective way to test new treatments.

One of the myths surrounding the advent of PatientsLikeMe and other social networking sites is that they increase health inequalities as only a small and self-selected group of patients use them. However social networking should be seen as the democratisation of care. In nearly all industries there are those consumers that lead and those that follow. The challenge is to engage the leaders for the benefit of all. It only takes a few people to make informed choices to drive change. In car manufacturing, it is only a small group of determined experts that fully test out every feature of a new car, yet this ensures that the quality of cars rises for every driver. The same is true of healthcare. As well as capturing the patient perspective, social networking also reaps the benefits of the effort and investment patients and families already make in managing their healthcare.

While consumers have been quick to seize the value of PatientsLikeMe and social networking, much of the healthcare world has yet to take full advantage. The professions, healthcare providers and even payors and commissioners, still do not invest any significant effort and resource into measuring if treatments and services are actually working to the benefit of patients. PatientsLikeMe has so far only been able to gain funding from pharmaceutical companies that are still the main customer of patient-reported outcomes. However the speed and cost effectiveness of social networking as a research tool mean that the NHS can begin to harness patient voice to transform services. Whether the new commissioners can take advantage of these opportunities will be a major test of this Government’s reforms.

Blog following a Reform roundtable seminar on “Patient driven medicine” on 16 April 2013, led by Jamie Heywood, Chair, PatientsLikeMe.

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