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Tessa Richards

Tessa Richards: Health 2.0—new technologies and e-patients

18 Jun, 14 | by BMJ

Tessa Richards“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…

Tessa Richards: The right to be supported to self manage disease

16 May, 14 | by BMJ

Tessa RichardsOn 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…

Tessa Richards: “All I ask is that you listen”

14 Apr, 14 | by BMJ

Tessa RichardsIf 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…

Tessa Richards: It’s time to turn healthcare upside down

21 Mar, 14 | by BMJ

Tessa RichardsMarch 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…

Tessa Richards: Access to health records—patients first

4 Mar, 14 | by BMJ

Tessa RichardsCriticism 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…

Tessa Richards: The rise and reach of expert patients

17 Jan, 14 | by BMJ

Tessa RichardsIn 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…

Tessa Richards: Leadership matters—lessons from Lithuania

26 Nov, 13 | by BMJ

Tessa RichardsAt 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…

Tessa Richards: Lifting the lid on information and learning from it

10 Sep, 13 | by BMJ

Tessa RichardsProgress. 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…

Tessa Richards: How can we get better at listening?

16 Aug, 13 | by BMJ Group

Tessa RichardsReports 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…

Tessa Richards: Stop pushing propaganda to patients

27 Mar, 13 | by BMJ

Tessa RichardsThere is something to be said for wearing your heart on your sleeve, and few do it to greater effect than Margaret McCartney, a GP in Glasgow. She exuded frustration as she galvanised a session on public and patient involvement at the Evidence Live conference, in which she explained why she had reached the point of asking, “What are we GPs doing? And who is it for?”

“We are being forced to meet targets and priorities set by the government not by our patients,” she said, and it’s leaving scant time to meet their needs. “Most of them are old, with multimorbidities and they just want our help to get through the next bout of illness.” more…

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