At its core, Medicine X asked a fundamental question – How can technology be used to improve health care? Unlike traditional medical conferences, Medicine X brought together all of the stakeholders in medicine—health care providers, patients, caretakers, technologists and researchers – and built a collaborative environment to foster discourse and innovation between this eclectic group. Attendees traded M&Ms at breaks, took walks with presenters and participated in small Master Class seminars. Many of them used Twitter to share insights – more than 500 per day. And for every person who attended, another twenty followed online via livestream broadcast.
One of the hallmarks of the Medicine X conference is its inclusion of patients. More than a third of the conference presenters and participants were patients, known as ePatients for their savvy use of technology to manage their health. Their presence at the conference is symbolic of the need for their presence in other parts of the health care realm, said executive director of Medicine X Larry Chu, MD, MS. "We cannot fix health care without involving all of the stakeholders."
Beyond patient-centered care, Medicine X challenged participants to embrace patient-driven care. According to closing speaker and self-proclaimed technology optimist Vinod Khosla, the health care system will not change itself from the inside. "The system only changes if we empower the one person who cares about their health the most – the patient," said Khosla, co-founder of Sun Microsystems and current venture capitalist. "Over the next decade, I believe people will become the CEOs of their own health."
Empowering the patient
More and more, these active, engaged patients are using technology to capture information about their health. Self-tracking is not a new phenomenon, but it is on the rise. Sixty-nine percent of people identify themselves as self-trackers, and roughly a quarter of these individuals use some type of device to track their health, according to Ernesto Ramirez, global director of Quantified Self. Miniaturized electronics and smart phones allow consumers to wear a proliferation of medical devices, and to connect that data via mobile internet with other patients and their providers.
There's a whole ecosystem of products available. One device tracks food-shopping habits and helps the user change nutrition habits. Others track heart rate and sugar levels, help manage medications and measure activity levels and calorie intake. Smart phones can also act as portable EKG machines and ear infection monitors.
Self-tracking allows patients to monitor their health daily, even hourly, and many find solutions using their own data. Sara Riggare, a self-tracking ePatient with Parkinson's disease, explained how individuals with chronic illnesses constantly experiment on themselves to try and feel better. They take yoga, try different diets, meditate, use herbal supplements, yet much of this information is not shared with their doctors. They live with their chronic disease 365 days a year, but only see their doctor about one hour per year. "The rest of the 8,765 hours are self care," she says. "I wondered what would happen if we could collect all the information occurring during the blue hours and share that with our clinician during that one-hour appointment?" Self-tracking allows them to collect data on their health for the other 99 percent of the time.
Patients are also using the internet and social media to share that information with other patients.
"You get experience and wisdom from other patients," said Michael Weiss, a Crohn's patient, who is part of a network of "patient warriors" who pair newly diagnosed patients with experienced patients.
"Patient to patient interaction is a vital component of health care," added Michael Seres, the eleventh person in the United Kingdom to receive a small bowel transplant. After a lifetime of Crohn's disease led him to intestinal failure, Seres began a blog about his journey. Lead dietician for his transplant team, Marion O'Connor, was so impressed by the accuracy of his reporting, she incorporated his blog into the information Oxford University Hospitals shares with its transplant patients. "We have a network of patients who communicate with each other, help each other diagnose symptoms and learn about new options," said Seres. "Patients have a direct outcome on other patients."
"The traditional medical model has been disrupted by the active, engaged, participatory patient," said Sarah Krug of the Society for Participatory Medicine. "The networked patient has shifted from being a passenger to the co-driver of their health care."
And these active, engaged patients require active physician partners. More than one conference presenter challenged physicians to listen to patients, to consider the vast amount of data patients can collect on themselves and their health, and to factor this new type of health care knowledge into their diagnosis and treatment of disease.
"Data can help physicians identify the problem," said Ted Tanner, entrepreneur and chief technology officer for Pokitdok. "We need data to flow from consumers to their practitioners to make health improvements."
By Grace Hammerstrom