Legend has it that the Anglo-Saxon king Canute believed his command could hold back the tide. Last week, Financial Times columnist Robert Shrimsley conjured up Canute’s image, as he describes how he went to his GP for a problem and the latter pleaded with him not to go to the internet for information. Of course, the first thing Shrimsley did after leaving the surgery was to search the web, and he says that “‘Don’t google this’ is surely the most forlorn demand since ‘Don’t eat the apple’.”

It’s a great piece. He says cross examination of a doctor was “almost akin to arguing with a priest,” and, tongue in cheek, states it must be “jolly tiresome” for doctors to deal with informed patients; and even more so with “slightly informed ones.” But he urges them to put themselves on “the right side of modernity” and deal with a potentially empowered public. more…

“All changed, changed utterly.” W B Yeats’s famous line was triggered by the Irish rebellion in 1916. Close to 100 years on, it could describe how digital technologies and social media are changing the world; not least the world of healthcare. At the Doctors 2.0 & You conference—launched and led by Denise Silber, a Paris based digital health consultant—delegates fizzed with enthusiasm. Their tweets contended with the dawn chorus, as word was instantly spread about “le dernier mot” on health apps, “serious” games for health, “wearables” (think Google Glasses), and the use of social media in health (#doctors20). And on how big data around the global, online discourse on health is being tracked and analysed.

In contrast to many health fora, patient representation was strong, and their contributions equally so. Those who have found the willpower and energy to use their experience of illness to innovate, and help others, tend to be effective advocates. A well known example is e-patient Dave (deBronkart), author of Let Patients Help, which is a must read for doctors and patients alike. He defines e-patients as “empowered, engaged, equipped, and enabled.” more…

On the eve of the EU elections, reports and manifestos aimed at attracting the attention of newly elected MEPs and commission officials have been flowing thick and fast. A new one shortly to be added to their list has the working title, “Empowered patients are a resource not a cost.” It will set out recommendations on how people living with long term chronic disease should be supported to self-manage not just the medical aspects of their conditions, but the social, psychological, caring, and financial burdens they impose too. more…

If healthcare was a patient, the diagnosis would be multimorbidity. There is a near terminal mix of fragmentation of services, failure to listen and respond to patients concerns, lack of compassion, patchy performance on protecting and promoting health, and unsustainably high costs. Simplistic perhaps, but fighting talk galvanises. Maureen Bisognano, president of the Institute of Healthcare Improvement, used a similar scenario to argue the case for “flipping” healthcare, at last week’s Quality Forum in Paris. more…

Criticism of the government’s plan to collect data from patients’ medical records to build a new NHS database—care.data—has been fast and furious. With data collection postponed amid public concern about its confidentiality the government is now fielding advice on how to get its “busted” scheme right next time round.

While the research potential of analysing “big data”  has not been questioned, comment has been made on the government’s priorities. “Why has the NHS has moved so quickly to provide patient records to third parties and so slowly to provide data to the patients themselves?” This question, posed last week by Mohammad Al Ubaydli, founder of PatientsKnowBest, is a good one. more…

In the Victorian era the patients who acquired public profiles tended to be doubly disadvantaged. Think Joseph Merrick. His fame as the “Elephant Man” stemmed from others exploiting his disfiguring disorder (Proteus syndrome?) for financial gain. Now patients are becoming well known less for shouldering disease burdens so much as using their experience to help others. A handful have achieved celebrity status…….

They give TED talks, publish books, and are run off their feet meeting calls to speak at medical meetings. Convenors are beginning to recognise the value, and all should, of ticking the “patient included” box.

It’s not hard to see why patients become passionate advocates for others. The insight gained from experiencing prolonged physical and mental ill health motivates you to help fellow patients in a way that nothing else can. more…

Progress. The march towards giving patients online access to their medical records is accelerating. The Society of Participatory Medicine has put out the bunting in welcome to the announcement by the OpenNotes initiative that 1.8 million more US patients can see and share full versions of their doctor’s notes; and that big US providers, including the Veterans Administration and the Beth Israel Deaconess Medical Center, are on track to provide online access to notes from all specialties in 2014. Back in the UK progress seems slower, despite the government’s pledge to give all patients online access to their GP records by 2015.

Most patients are of course long inured to doctors holding all the information cards and dealing out selected bits in dribs and drabs. Asking a GP for a print out of your medical record can still feel like an act of aggression. One friend, worried and confused about his multiple disorders and nine different medications, said he did not dare ask his practice for a copy of his notes in case, “my GP holds it against me.” more…

Reports urging health professionals to listen to patients and use their experience to improve the quality, value, and safety of healthcare have been flowing thick and fast. Last week another swelled their ranks. In his report on how the NHS might achieve the Shangri La of causing “zero harm,” US health guru Don Berwick headlined the message that “no source of information is more valuable” than the patient’s voice. So does another report launched this week by the US Institute of Medicine (IOM). Fronted by a video, it explores the why, where, and how of patient partnership and is based on a workshop held earlier this year, which I followed online. more…

How much of the care patients receive is determined by their doctor’s decision to provide it as opposed to their need and preference for it? And how much money might be saved if investigations and treatments of limited or no value to patients were stopped? These questions were debated at two recent meetings on practice variation, in the Netherlands, and the Wennberg International Collaborative in London. Both agreed on a fundamental point; if patients aren’t asked what their preferences for care are and their views of its outcome are not solicited then these questions can’t be answered. more…

Given that health is our most precious commodity it is odd that many of us know so little about it. Part of the reason is that we are not used to seeing and thinking about our own health information, for most us don’t get much of it. But things are changing. The NHS has pledged to give everyone online access to their GP medical records by 2015. Controlling your own health record may become an option too. The vision is to turn us all into engaged, active, co producers of health and self managers of disease. If only it were that simple….. more…