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Are online patients empowered patients?

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In April I was in the US and went to the final day of a Healthcare “Accelerator” called Healthbox. This was the last event of a three-month programme: 10 start ups in healthcare had been selected to go through a boot camp for entrepreneurs, and come to the UK soon. Investors were invited to view and potentially invest in the companies.

Other than the young entrepreneurs the highlight was a keynote from Todd Park, the chief technology officer for the US government and previously for the health department - aged 39, amazing bloke. Lots of stuff on the web re. Todd but his basic message was that there has never been a better time to be an entrepreneur in US healthcare, and that liberating health data is free fuel for innovation and entrepreneurs, plus the patients lap it up. (He also said to shred the memo which says it is impossible but they always say that..)

Of course he knows our own Tim Kelsey who is currently executive director of transparency and open data for the government. This is really important for patient empowerment - the high level of engagement of patients in the US with data available electronically and on the web has taken “the authorities” by surprise. The Blue Button programme run by the Veterans Administration anticipated that 250,000 people would download their own data and 750,000 did in the first few months of it becoming available. Health organisations have also organised “code-a-thons” like the one in the film The Social Network to crack really difficult technical/software issues in a rapid timeframe. How near are we to this here in the UK? It seems that making data available immediately hits the barriers of patient confidentiality, perhaps rightly, but how long until we get meaningful and safe access?

Though there are still major privacy issues to address in the US too, Patient Health Records (PHRs) such as Microsoft HealthVaultGoogle HealthWebMD PHR, and Revolution Health PHR mean millions of dollars in cost-savings and potentially safer transfers of records to those who need to see them. Community health data is being mashed up by Google, integrated into Bing, and visualized by Palantir. It will also be the focus of an upcoming “Health 2.0 Developer Challenge”, featuring a series of code-a-thons and team competitions.

While only about 10 per cent of Americans now use electronic patient health records, there are more than 17,000 health and fitness applications in the Android and iTunes marketplaces demonstrating the explosion of patients taking an interesting in their own health. According to the GSMA association of mobile operators, the number of connected devices will leap from nine billion in 2011 to almost 24 billion by 2020 so this will only grow.

Online forums for chronic illness gives some people a reason to “keep going”. Examples include Patients Like Me, which has over 144,000 patients with over 1,000 conditions; DailyStrength, which offers online discussion groups for people going through a wide variety of medical treatments, ailments, or conditions; and CarePages also connects patients by encouraging them to share their stories through blogging and building support circles among friends, family, and peers.

We don’t have too much here in comparison, although there is an online community for people with for rare diseases. The forums and online communities run by the major charities such as Macmillan Cancer Support are growing but should we expect an explosion sometime soon? Coupled with the availability of online patient data, that would be an exciting mix for patients and organisations in the UK.

More information

With thanks to Roger Gorman (roger@profinda.com) and Healthbox/Sandbox: http://www.sandboxindustries.com

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From Innovation Eye

Pamela Garside is a consultant at Newhealth and co-director of the Cambridge Health Network.

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