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…

To what extent are we sabotaging the future health and wellbeing of our children through ignorance, neglect, and misguided policy? And what can we do to redress this? Discuss.

Discuss? The education and public health experts participating in an international cross-sector meeting convened by the Salzburg Global Seminar in Klingenthal, near Strasbourg last week, scarcely drew breath. But there was a lot to talk about.  Improving the life trajectories of children, particularly disadvantaged ones, through changes in policy and practice across the spectrum of child development and education is a challenging task. more…

Storm clouds hovered above Brussels. Europe’s heads of state battled away, yet again, to try and save the eurozone from collapse. Down the road an international group of clinicians, researchers, and policy makers questioned how Europe’s beleaguered health systems can cope as demand for care soars and workforces shrink.

The European Commission warned member states they would be short of a million skilled healthcare workers by 2020 over a year ago. Over the past three years it’s stumped up several millions of euro’s to support three vast quantitative and qualitative data mapping projects on Europe’s workforce. Information from these provided the backbone for a recent meeting on workforce planning and mobility. more…

Is our increasing life expectancy something to celebrate or despair of? It’s a question that’s exercising several sectors right now and it’s not hard to see why. All societies are ageing, but the fastest population increase is among the “oldest old,” and their projected need for health and long term care is daunting.

Currently around 1.4 million UK citizens are over 85. By 2035 the UK Office for National Statistics estimates it will be 3.6 million. Data from the Organisation for Economic Co-operation and Development (OECD) paint a similar picture and in its recent report, entitled Help Wanted, it estimates that the proportion of people over 80 will increase from a current  4% to 10% by 2050. more…

What will it take to persuade monolithic health systems to put patient’s priorities at the heart of what they do? As researchers, health professionals, and patients debated this question at the sixth international “shared decision making” meeting in Maastricht last week, the frustration was tangible. A survey to inform the meeting *reveals that while many countries are nominally signed up to initiatives to provide patients with the opportunity to participate in shaping services and making informed and shared decisions about their care. In practice, care on the ground is far from patient centred. Medical paternalism is alive and well. more…