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 1 May 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 five 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.

Paul Wicks is vice president of innovation at PatientsLikeMe.

Competing interests: Paul Wicks is an employee of PatientsLikeMe and receives research funding from pharmaceutical companies. For full details, see his page on the Patient Panel group.