2 posts tagged “BMJ”

Making sure conferences are “Patients Included”

Posted May 1st, 2015 by

Picture this: you’re a medical professional and are about to open the doors to a conference you’ve spent years pulling together. You’ve booked your venue, have your sponsors lined up, got top headliners to give keynotes, picked your Twitter hashtag and have invited every industry pro to be a part of the event.

In walk the physicians; check. Allied health professionals; check. Pharmacists; check. Industry leaders, life science CEO’s and top researchers; check, check, check.

Notice anyone that’s missing? If medical conferences exist to create a network, to stimulate new collaborations, overturn redundant thinking, and to help attendees return to work reinvigorated, the conference that excludes patients misses hearing the most important voices in medicine.

But luckily for you, patients living with a variety of conditions aren’t just sitting on the sidelines anymore. They’re proactively participating in these conferences any way they can, even if that means going through the virtual window. They watch the hashtag, pose questions, say they wish the conference were live-streamed, and ask attendees to smuggle out knowledge they could use to improve their care or offer them hope. If they’re ignored or marginalized they take to the Twittersphere and let their displeasure be known.

“The slow boring of hard boards”
Over a decade ago the Outcome Measures in Rheumatology (OMERACT) began inviting patients to its meetings, initially as observers, later as participants and then finally as true co-producers. It was a long journey, and as patient research partner Maarten de Wit has described, not always easy for its patient members. However the team has documented the benefits of patient inclusion such as: “widening the research agenda; including patient relevant outcomes in core sets; enhancing patient reported instruments; changing the culture of OMERACT… identifying previously neglected outcome domains such as fatigue, sleep disturbances and flares which prompted collaborative working on new programmes of research.”

A new mechanism for change
On May 1st 2015, a group of volunteers hope to take patient inclusivity to the next level by releasing version 1.0 of a crowdsourced charter called #PatientsIncluded. It contains five clauses based on Lucien Englen’s astute observation that there are too many conferences lacking patients on the planning committee, on stage, and in the audience. Medical conferences that are certain they meet the criteria have the right to use the “Patients Included” logo, and we hope will rapidly come to realize the benefits that can accrue.

The charter is by no means a silver bullet – it is a tool to encourage conference organizers to think past tokenism, be ambitious in their striving to integrate, and to reward those who take the uncomfortable step to try something different. My hope is that a wellspring of advice, best practices, and strategies will emerge from conference organizers as they deal with issues of cost, inclusivity, managing tensions, and reflecting on the changes made. Patients will develop their own resources to help one another plan, influence, participate, and engage in what might well be an uncomfortable and unfamiliar environment themselves.

As a member of the 5-strong patient panel at this month’s International Forum on Safety and Quality, hosted by the BMJ, there was much to admire from the way patients were celebrated and invited to speak and chair sessions. It was also clear that the scientific advisory board is taking seriously the notion that patients are  experts in their own right with much to offer. However it’s clear too that advocating and just being physically present at a medical conference is hard and exhausting work.

I hope actors on both sides of the qualification fence will work to support one another and acknowledge that this is a journey. Mistakes will be made. Iterations will have to occur. The name itself, version 1.0, demands that we constantly realign  and have the confidence to continue forward. The reward for the future will be that of professionals and patient-experts joining forces to advance our collective understanding of illness, formulate new plans of attack, and forge new weapons in the fight against disease.

PatientsLikeMe member PaulWicks


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Subjects no more: what happens when trial participants realize they hold the power in clinical trials?

Posted February 18th, 2014 by

When I first became involved with online communities back in 2002, I moderated a small forum for patients with ALS/MND in the UK at King’s College Hospital to connect with one another, share tips and support, and to help our care center to serve them better. One area that remains controversial even to this day is clinical trials. ALS is a rapidly fatal and incurable illness, and as a young researcher I was often trying to field questions that patients had about the trials process:

“Why aren’t there more trials taking place?”

“Why do we have to have a placebo?”

“If researchers think commonly available treatments like dietary supplements or antibiotics might slow my disease, why can’t I just take them anyway rather than being enrolled in a trial?”

Given the severity of their situation and the slow pace of clinical trials (it’s estimated that it takes over 10 years for a new discovery to go from the lab to the clinic), I certainly sympathized with their frustrations and did my best to get the answers they needed, asking my medical colleagues where I could and translating the technical jargon. A few patients decided to go a step further than challenging the status quo, however, and took actions into their own hands. One patient taking part in a trial sent her medication off to a private lab to test whether or not she was on placebo, and several others took off-label experimental ALS treatments like creatine or minocycline. Some of them even went abroad to China for highly controversial stem cell treatments. In the end, none of these interventions were shown to slow the disease, but it certainly showed what was possible when a smart, dedicated, and adventurous group of patients could organize online.

Fast-forward more than ten years and we see a very different world, where patients have a growing voice in treatment approval, the design of patient reported outcome measures, and increasingly share their trial experiences through social media. That’s what inspired us to write our latest article just published in the British Medical Journal which details our experiences with how members of our community have replicated a clinical trial, have started sharing their data with leading researchers to debunk alternative “cures” for their disease, and have even started taking trials into their own hands. We feel these are symptoms of a greater underlying problem that has been with the design of clinical trials from the start – trials are all take and no give.

Patients take all the risk with their health, their time, their bodies, and in return they are supposed to temporarily suspend their instinctual curiosity to know more about their health status through self-monitoring or to interact with other patients who might be in a trial, all for the good of science and other patients. Modern technology up-ends that power dynamic though, and now it’s almost as easy for a patient to measure their health status with patient-reported outcomes, wearable devices, or even lab tests as it is for their doctor. In that case, can we really say patients are truly blinded anymore? The double-blind placebo-controlled randomized controlled trial is a “gold standard” in medicine, but unless it adapts to the changing realities of the patient empowerment landscape, it will be inherently unsustainable.

That’s why our team is embarking on research this year to gain a new understanding of what patients want from trials and a new understanding of the social contract as patients want it written. Our hope is that we can bring them together with the scientific needs of researchers to conduct robust science. It won’t be easy, and it might not be popular with everyone, but it’s the best path we can see towards faster cures that respects the rights of patients to be partners, not just subjects.

PatientsLikeMe member PaulWicks