Although we are still at the early stages, manufacturers are starting to make individual participant data (IPD) from their clinical trials available. One of the key issues that has to be addressed is how to deal with the privacy question. If clinical trial data are anonymized, then it can be shared without having to go […]
Category: Patient perspectives
Joyce Lee: Social media, Google, and the internet are medical therapy
I have to thank my colleague @SusannahFox for alerting me to this Washington Post article—about a campaign by the government in Belgium to get people to stop Googling their symptoms. Check out the video that was made (below). In it the narrator states: “I have a deadly disease and I am going to die in six weeks. […]
The BMJ Today: Relationships in medicine
Relationships are at the heart of medical practice. These relationships are built on trust and shared clinical, academic, personal, or economic goals. Two articles just published on thebmj.com explore ways to strengthen these relationships at the two ends of the spectrum of clinical practice: the clinical relationship between a doctor and his (the author is a man) […]
The BMJ Today: Unravelling the notion of informed patient choice
“Doctor, what would you do in my shoes?” This simple plea for advice from a patient may stump many a doctor. Involving patients in decisions about their care is increasingly regarded as the sine qua non of medical practice. Anna Mead Robson cautions, however, “that by continuing to champion patient choice at the expense of […]
Anna Mead-Robson: In defence of paternalism
I recently had the good fortune to attend “Medicine Unboxed,” a two day series of talks and events exploring the links between art and medicine. This year as an audience we were asked to consider the proposal: “Patient choice will be the death knell of the NHS.” What followed was a debate covering a range of […]
Paul Laboi: Making dialysis care more person centred
It’s increasingly recognised that empowering people to take a greater role in managing their healthcare is beneficial for both patients and healthcare professionals, especially for those living with long term conditions. Evidence shows that many people enjoy taking an active role in their treatment, and that doing so can lead to better outcomes and improved […]
Neal Maskrey: Treating the patient and not the disease
It was the biggest turnout for many a year. In our small coastal town in the north west of England, 5000 of us stood together bare headed for an hour on a magnificently clear but cold November morning. The Salvation Army brass band was muted but played beautifully, and there was pomp and circumstance aplenty. But […]
Paul Wicks: Patients at the heart of quality of life research
“It seems to me,” said Parkinson’s patient and activist Jon Stamford, “that ‘quality of life’ is when you tell me what’s missing in my life. That seems to me to be rather odd.” This polite but piercing insight was shared on stage in 2012 at the International Society for Quality of Life Research (ISOQOL) in […]
Rupert Whitaker: A pill for risky sex—another step on the road to a pill for bad housing
PrEP—or chemoprophylaxis against HIV infection, as the less sexy phrase goes—is about using chemicals to prevent yourself from contracting HIV during sex or the sharing of injection equipment, the acronym standing for “pre-exposure prophylaxis.” It has gradually emerged as a possibility as a public health intervention after six years of clinical trials. It looks very promising, […]
Cordelia Galgut: Emotional support through breast cancer
Before being diagnosed with primary breast cancer myself, aged 49 in 2004, I would offer emotional support to women with this diagnosis, and arrogantly assume I understood pretty well what they were going through, at all stages—and my then clients were too polite to tell me to the contrary. Little did I know! Life on […]