Words. As we look ahead to an increasingly connected and interconnected world, how do we, as clinicians and patients, account for the words we use? How do we record the words we use to create a narrative and a context for ongoing treatment, as an archive of data that could help with research, with therapy […]
Category: Patient perspectives
Sharon Roman: I am the girl next door
I flatter myself that the wedding ring on my finger does not stop the opposite sex from finding me attractive and noticing me. On good days, I am able to appear to be just as attractive and “normal” as everyone else does, if you do not look too closely. My apparent normalcy does however hinder and frustrate me […]
Polly Moyer: On balance, we’re making progress
Balance Awareness Week (BAW) 2016 recently took place. Given that I have to co-exist with a rare condition that affects my balance I can’t say that I was an impartial observer to some of the relevant news that I read during this time. Some of it made me very happy, some of it depressed me, […]
Paul Buchanan: What are we meant to eat?
The devil is in the detail, so the saying goes, and the detail has been supplied by decades of peer-reviewed and published research which told us all that fat is the enemy. Generations of people have been born into a world where all sections of society—the media, film, fashion, food, and healthcare have directed us […]
Paul Buchanan: Social media and the patient experience
The creation of the Diabetes Online Community, #gbdoc, in 2012 was a consequence of my diagnosis with Type 1 diabetes. Previously a stranger to the “health” world there was now an imperative to learn, and learn quickly, how to live with and manage a life-long chronic condition. The team of doctors and nurses who initially diagnosed […]
Matthias Wienold: Think of sepsis—a patient’s perspective
The case for increased attention to and better management of sepsis is growing. As the first World Sepsis Congress convincingly demonstrated, international and national healthcare authorities, NGOs, policy makers, clinical scientists, researchers, and pioneers in healthcare improvement need to work together to reduce the burden of this disease. Patients and family members are also among […]
Paul Wicks: Google’s Deepmind health group invites patient participation
In the aftermath of some difficult questions posed by privacy advocates around the Royal Free’s pilot of Deepmind’s Streams app, this week Deepmind Health invited over 120 patients, patient advocates, carers, and health researchers to a half-day event at Google Headquarters in London. For the past decade the search giant Google has been able to […]
Paul Buchanan: No decision about me without me
Many are the conversations, opinions, statements, and arguments within the patient world about the meaning of that phrase “No decision about me without me”—but what does it actually mean, and to whom? Many of us have emotionally connected it to the phrase “Do No Harm” and think of it in the same terms, believing that […]
Simon McGrath: PACE trial shows why medicine needs patients to scrutinise studies about their health
Like all patients, what I want most from clinical research is treatments that work, not ones that merely look good on paper. As The BMJ has pointed out, patients are often faced with over-hyped treatments and an incomplete research base biased towards positive results. These biases arise partly because of “publish or perish” pressure on […]
Matthias Wienold: Patient safety—when patients take centre stage
It is a rare moment for most physicians to engage with patients beyond the professional encounter. Some friends may become our patients, and sometimes patients can become friends—few physicians, however, take active roles in patient organisations or interact with patient representatives on an ongoing basis. Even fewer physicians take on a patient’s role when they […]