How Emerging Information Technology Is Reshaping the Practice of Medicine

In late September, nearly 450 attendees from 30 countries flocked to the Li Ka Shing Center for Learning and Knowledge at Stanford University to talk about the future of medicine. The conference, Stanford Medicine X, brought together physicians, nurses, patients, technologists, researchers and health industry experts and followers to explore technology’s role in reshaping medicine. It asked a fundamental question: How will social media and information technology change the way doctors and patients work together to improve health? And it engaged all of the stakeholders in the health care system in the discussion.

"One of the major goals of Stanford Medicine X was to bring voices from all health care stakeholders together to work to solve real problems," says conference organizer Larry Chu, MD, assistant professor of anesthesia. "I believe real change occurs through engagement and interaction between e-patients and researchers, technologists, health care providers and all other stakeholders."

Unlike a typical medical conference, Medicine X ensured that patients were included among its panel of speakers and attendees. The conference gave them a platform to tell their stories, voice their frustrations and successes and explain what they need from the medical community.

• Allan Bailey wants a doctor who is a partner, someone who can explain the research, interpret the data.
• Thomas Christiansen wants doctors to use proven systems' approaches from business and industry to uncover the causes of symptoms and disease.
• Katie McCurdy wants a doctor who listens to her and helps decipher her self-tracking data.
• Britt Johnson wants doctors to look up from their charts and listen.

These were real patients who spoke at the conference. They all suffer from chronic medical conditions. Most have exhausted traditional health care options and are desperately searching for some way to relieve painful, uncomfortable symptoms. Many are turning to self-tracking as a means of managing their own health.

Meet the self-trackers

There is a growing population of health care patients who use a variety of devices to gather data about their own health. They are networking online with other patients facing the same health struggles, and are researching medical interventions and alternative treatments online.

One such e-patient, Katie McCurdy, reluctantly began self-tracking about six months ago after relentless encouragement from fellow patient Thomas Christiansen. McCurdy, who suffers from myasthenia gravis, began tracking her sleep, food intake, environment and activities and in just a few months uncovered a number of food triggers for her flare-ups. Because of her self-tracking, she has been able to modify her behavior and realize improved stability in her health.

Sharing her self-tracking data and gaining a new understanding of her disease with her physician hasn’t been as successful. Physicians are sympathetic, she says, but don't seem to know what to do with the information. "I want a doctor who will work with me to understand current research and interpret my self-tracking data," she adds. "I would like a doctor who believes me."

A fellow patient and avid self-tracker, Christiansen was unsatisfied with his 30-year struggle to control his severe allergies and eczema and the health care system’s approach to helping him. He started self-tracking a few years ago and has recently combined the techniques he developed to monitor his own daily life with his business and systems background, and is launching a mobile and online service, MyMee, later this year. According to Christiansen, MyMee will empower users to uncover the hidden causes of their health concerns in collaboration with their practitioners.

Another patient who spoke at Medicine X, Sean Aherns, used his lifetime of struggling with Crohn’s disease to launch a social health network for patients with Crohn’s and colitis. Aherns believes self-tracking can be used for a greater good. His website, Crohnology.com, lets patients track their health, share data and experiences with other patients, learn what treatments work for others and meet fellow patients who live nearby. 

How big is the self-tracking community?

Self-tracking is an important part of participatory medicine, according to Susannah Fox, associate director of digital strategy at the Pew Internet & American Life Project, whose opening remarks kicked off the Self-Tracking Symposium. Fox, who refers to herself as an Internet geologist, studies the social impact of the Internet with a special interest in health. She shared the latest research findings on health care self-tracking with the Medicine X audience:

• Sixty percent of American adults track their weight, diet or exercise routine;
• 1 in 3 use a notebook or journal to track personal health data such as blood pressure, blood sugar or headaches, and 1 in 5 use an app, spreadsheet or other tool;
• 34 percent of self-trackers say their data collection has affected a health decision;
• 40 percent of self trackers say their efforts have led them to ask a doctor a new question or seek a second opinion; and
• 46 percent of self-trackers say it has changed their overall approach to health.

Yet only half of these individuals share their data with their doctors, Fox says. The organizers and participants in Medicine X hope to change that.

The era of the wearable

On days two and three of the conference, the focus shifted from self-tracking to emerging technologies, the networked patients and mHealth (mobile health). An explosion of emerging medical technology is spawning home-brewed health.

According to Sonny Vu, serial co-founder and technology innovator, wearable computing may be the next technology frontier. Already, individuals are wearing a variety of mobile devices to track their health — from continuous blood glucose monitors to pedometers and other shoe-worn products that track distance and gait, to patches and headbands that monitor sleep and smart fabrics that track heart rate. Many of these devices plug into smart phones to display and track results. And many more are in the research and development pipeline.

In addition to helping individual patients, David Van Sickle, PhD, sees another use for monitoring devices — that of improving public health. Van Sickle has spent his entire career stalking asthma. His company, Asthmapolis, started adding chips, sensors and radios to inhalers with the idea of tracking when and where medication is used and putting that information to work. Van Sickle sees the ability of mobile health applications to collect vast amounts of data from smart inhalers as a means of tracking the epidemiology of asthma across millions of users to hone in on its causes and develop disease management solutions.

"I'm more excited than ever about the opportunities in mHealth," he says. "We are building technology that makes it easier for patients and physicians to manage chronic diseases with less effort."

By Grace Hammerstrom