The Ashya King case has gone global, and in the UK is assuming Mid Staffordshire proportions. The law, as interpreted, would appear to have totally overlooked the best interests of a gravely ill child: to have parents who love and care for you at your side.

Amid the media hullabaloo, unfolding events, heated debate, and hasty responses, the seminal event: the “breakdown in communication” between the family and Southampton hospital staff, should prompt doctors everywhere to take a long, hard look at how they interact with patients and their families. more…

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…

March sees the picturesque town of Basel transformed as it celebrates Fastnacht. Masks are donned, people pour into the streets to the sound of piccolos and drums, and party. Transformation was very much on the minds of the 300 participants from 22 countries who walked over confetti strewn streets to the town’s spanking white congress centre to debate, “How patients are changing the face of healthcare.” Their conclusion? A bit, but not nearly enough. 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…

At this year’s European Health Forum Gastein, the wannabe Davos for health, a call went out for “stronger leadership on health.” Europe needs health ministers who can advocate to protect the health of its citizens as effectively as their counterparts in finance and industry speak up for and guard it’s economic interests. Tweets from the meeting included the following tongue in cheek plea: #EHFG2013 Could the UK borrow the current Lithuanian health minister? Vast improvement on what we’ve got!

It’s not hard to see why Vytenis Povilas Andriukaitis, who has been in post less than a year, has gained a reputation as one of Europe’s foremost leaders on health. Born in a Gulag camp in Siberia, he has long been politically active; he was arrested by the KGB in 1976. His recent book, which warns against “re-framing” Lithuania’s turbulent recent history, has been praised by critics. He is also a doctor, and he worked as a cardiac surgeon between 1975 and 1993. 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…