When Dr. Leslie Kernisan, a geriatrician who practices in San Francisco, first attended the Stanford Medicine X conference at Stanford University in 2013, the most remarkable innovations she encountered, she later recalled, weren’t in tech advances or brilliant breakthroughs in research. Instead they were in the level of involvement by patients, who told their personal stories on stage and around the table during meals and who took part in brainstorming health-care solutions and in presenting new technologies, she wrote in a blog post after the event. Medicine X was founded on the premise that health-care innovation is accelerated when everyone — patients and caregivers, along with health-care providers and researchers — is included.
Along with the organizers’ use of storytelling, video, and music, the presence of patients “packed a powerful punch,” Kernisan wrote. “It all kept me feeling engaged and inspired during the event, and left me wishing that more academic conferences were like this.”
‘A Paradigm Shift’
Kernisan’s wish is more and more likely to be granted. Over the last decade, there has been a slow-moving revolution toward leveraging the advantages that accrue to both health-care professionals and patients when they can play a meaningful role at medical meetings.
From specialized meetings like Medicine X, in which patient involvement is part of the conference DNA, to meetings such as the European Respiratory Society (ERS) International Congress, where they take a much smaller but vital role, patients are now cropping up on conference-planning committees, as speakers and panelists, and as meeting participants. And at those organizations that embrace patient perspectives, leaders describe the results as game-changing.
In some instances, the move toward including patients has come about as a result of a personal epiphany. Speaking in 2010 at a technology conference on digital health in Dubai, Lucien Engelen, now director of the REshape Center for Health(care) Innovation at the Radboud University Nijmegen Medical Centre in the Netherlands, asked the audience if any patients were present. Not a single hand was raised. Engelen decided then and there not to accept any more speaking engagements at conferences where patients weren’t represented and subsequently wrote the ﬁrst draft of a “Patients Included” charter, now used to set standards for patient involvement at meetings.
At the European Lung Foundation (ELF), a patient-centered organization founded by the European Respiratory Society (ERS) and based in Sheffield, U.K., the shift toward patient involvement was more gradual. “It’s been 10 years, really, of evolution,” said Pippa Powell, ELF’s director.
ELF was founded in 2001 to raise funds for ERS, an effort that initially failed to launch, Powell said. That led to the realization that there was a big gap in ERS communication, “in that it focused so much on professionals and it didn’t focus on patients or the public,” Powell said. “The fact that we couldn’t raise money really rang alarm bells, because when people don’t understand lung disease, they don’t have empathy for people with lung disease and there isn’t enough funding for lung disease.”
ELF responded by building a network of patient organizations working in respiratory illness and connecting it to ERS, Powell said. “We said, ‘Look, we want to make sure that professionals and patients are talking the same talk and working together — we can invite you to the conference, have you as part of it, where you can build relationships with the professionals.’”
ELF started just by offering scholarships to patient organizations to come to the annual conference and attend sessions, so they could go back to their own countries and their own disease areas and share that information, Powell said. “So for us that was the real beneficial starting point, making sure that these organizations have access to the latest research and developments so they can communicate that.”
Over time, strong partnerships have developed between the professional community and the patient community, Powell said. At the annual ERS International Congress, which typically has 25,000 attendees and is the world’s largest meeting in the respiratory field, approximately 150 attendees are patients or patient representatives. Though their numbers are small, she said, there are sessions where patient speakers “really set the tone.”
Just inviting representatives from patient organizations to attend a conference is a good first step, Powell said. “Patient organizations are delighted to be able to come and take part in the conference — they get lots out of it and then they are able to go back to their communities and talk about how the organization is a leader in the field and that’s where they get their information from. I would say that’s a simple starting point and a simple win-win that doesn’t require that much investment or time.”
And their influence and perceived value at ELF is such that, now, Powell said, “we’re overwhelmed by the questions of ‘Can patients come sit on this board?’ ‘Can patients come and do this?’ ‘Can we make sure there are patients involved in that?’ And that’s not us, that’s us responding to the [health-care] professionals who want patient involvement. So it really has been a massive paradigm shift and a really positive one.”
The patient-involvement initiative is linked to the joint effort of ELF and ERC to leave a legacy behind in the cities where they meet. For example, when ERS meets in Paris this September, “we’ll be really talking to Parisians about the importance of clean air and air quality,” Powell said. “And we can engage our patient organizations in that, so the local patient organization will be involved and will help us to determine what the program looks like and what we talk about and what we do. And we really try and help the patient organizations interact and talk to each other during our conference and they can learn from each other as well.”
‘A Really Strong Voice’
Ten years ago you would have been hard-pressed to find many patients at the conferences organized by DIA (Drug Information Association), a 50-year-old nonprofit global organization that focuses on drug development and safety, said Sudip Parikh, senior vice president and managing director, DIA Americas. “Now, you will find sophisticated patient advocates at almost any meeting related to clinical specialties — some are more involved than others, but they are at every one of these meetings and they have a really strong voice.”
The impetus at DIA came from a board member who, Parikh said, felt strongly about patient involvement and convinced the rest of the board and leadership to pilot a patient-fellowship program at the global annual meeting, which consisted of bringing in patient advocates who wanted to learn about the drug-development process and allow them to sit in on sessions. After a decade of patient inclusion at DIA, now almost every session has a patient included, “because there are patients and patient-advocacy organizations that are very sophisticated about the process,” Parikh said.
A common objection by many medical societies and organizations to bringing consumers and patients into their meetings is that they are “fearful that the ‘scientific core’ might be diluted if the public becomes involved,” said Don Neal, founder and CEO of Washington, D.C.–based 360 Live Media, whose clients include medical associations.
And at DIA meetings, there initially was some resistance to patients at meetings, Parikh said. “I’d say that five years ago, it was a little challenging. Sometimes [the objection would be] ‘This part’s really scientific.’ But now, even a lot of the scientific sessions, it’s well understood that patients add value. The places where challenges still might remain are further back in the basic research.”
One area in which DIA actively seeks out patient participation is in helping to determine clinical endpoints, or the desired outcomes of new drugs, Parikh said. Researchers might be focused on whether a new treatment is better at preventing disease-related death than the standard therapy, while patients are focused on quality of life. Recently a drug was approved for the treatment of Duchenne muscular dystrophy, where the clinical trial data was not that compelling in terms of lengthening life spans. “The drug was really walking the line of not going to be approved,” Parikh said. At a DIA meeting, “a patient advocate made the case that things like being able to hold a spoon or being able to smile, or being able to raise your hand were very valuable endpoints.” The drug was approved.
Providing the ‘Story Line’
A common theme that Powell hears from ERS researchers and healthcare professionals is that exposure to patients at meetings allows them to consider the day-to-day practicalities and what is important, she said. “I think sometimes they can get lost in the bigger discussions and the more complex issues and forget at the end of the day what’s most important. And sometimes it isn’t what you think.”
For patients, “sometimes the things that are important to them are really simple,” Powell said. “Yes, they want research, and yes, they want progress in their disease area — but they also just want to be able to enjoy their life to the best of its potential.”
Patients “may not bring scientiﬁc or the statistical analysis to a meeting,” Parikh said, “but what they can do is to provide the story line for why you’re doing what you’re doing.” The association executive formerly worked as a research biochemist and had his own experience with the impact that personal perspectives can have on scientiﬁc work that has become abstract. “I worked in the most basic research you can work in,” Parikh said. “At that level, you’re looking at molecules, not people, and you’re trying to ﬁx molecules.”
Parikh’s ﬁrst experience with a patient advocate was someone with ALS, amyotrophic lateral sclerosis, known as Lou Gehrig’s disease. “This is a devastating disease,” he said. “It’s one where you are truly affected by the people who are going through it, because over the course of two years, they can go from functioning normally to not being able to move.
“Meeting those advocates, it changes your intensity level, it changes your pace of research,” he said. “You’re just not looking at molecules and trying to ﬁx the molecule, you’re looking at people and you’re saying, ‘If I can ﬁx this molecule, I can do something for this person who is standing right in front of me.’ That’s a game changer in terms of what it does to your patient, how hard you work.”
How Medicine X Makes Patients Partners
In 2010, when Larry Chu, a professor of anesthesiology at Stanford University Medical Center, posted a tweet announcing that he was creating a new conference. “I received a variety of responses,” he wrote recently, “but the one that remains the most poignant is the one I received from a patient, asking me, ‘Have you invited patients to your conference?’ I regretfully had not and realized immediately that I should probably meet this man.”
Medicine X, the conference that launched with Chu as its director in 2012, not only invited patients, but put them on an equal footing with other stakeholders, which included public health officials, venture capitalists, health-care practitioners, researchers, technologists, design experts, and business leaders. It asked the question: What might happen if leaders in health care elevated under-heard voices and learned from the greatest untapped resource: patients and their families?”
Based on years of partnering with patients at Medicine X, Chu and colleagues developed four pillars of patient involvement for conferences, which were published in the medical journal BMJ in 2016.
Accommodation Consider the medical, nutritional, and accessibility needs and financial assistance with travel and lodging arrangements as practical. For example, include patients in designing a designated physical space such as a wellness room that provides attendees with an area to rest or attend to personal care. Use of social media and free live streaming should be explored to allow participation by patients unable to travel.
Co-design Patients should be placed on an equal footing with program creators to help identify core conference themes, select speakers, and evaluate abstracts that relate to patient-centered issues
Engagement Meaningful numbers of patients should be included in the audience and speaking roles. Patients invited to attend or speak should be able to attend all sessions open to others attending the conference.
Education and mentorship Medicine X’s program incorporates peer-to-peer mentoring, advice, and presentation coaching, a pre-conference orientation meeting, and post-conference educational and support activities through social media and massive open online courses (MOOC). Education and mentorships enable patients to participate in creating future conferences and are crucial for a long term, sustainable strategy.