Today, an abundance of health information about symptoms and treatment options is just a click away by searching Google or visiting sites like the Mayo Clinic’s. Most physicians and hospitals offer online portals through which patients can look up their lab results and medical history, schedule appointments, and sometimes even access their doctors’ clinical notes.
But people aren’t just receiving information; increasingly, they’re generating and sharing health data and knowledge online. And that has the potential to revolutionize our approach to health care.
Every day, tens of thousands of patients log on to online health communities to discuss their condition and share ideas. Breast Cancer Straight Talk Support, a growing Facebook community of 14,000, provides women with emotional support and advice on anything from mitigating the side effects of chemotherapy to selecting a bra after a mastectomy. MyHealthTeams, with its simple infographics and tips based on patients’ experiences, offers a lifeline to people dealing with any of nearly 30 conditions, from autism to lupus.
Digital technologies are also facilitating patient-centered research through crowdsourcing. IBD Partners, for example, has created an online platform where patients with inflammatory bowel disease (IBD) can share their health data and formulate research questions that are meaningful to them.
But to realize the full promise of digital health tools, their developers need to address some key challenges.
1. Ensuring that digital health resources are useful and accessible to everyone, regardless of race, income, or education.
The fact is, many Americans are not taking part in the digital health revolution. The people who participate in many patient-centered research initiatives, for instance, tend to be white, educated women. And though most practices now offer some kind of patient portal, only about half of patients use them, and there are racial disparities in who signs up: 72 percent of white patients register, but only 28 percent of African American patients do so.
Our research indicates that online health communities that integrate social media and offer vibrant mobile apps may be accessible to a broader population — both because of their convenience and because the information generated by peers can be personalized, understandable, and actionable.
It’s also become apparent that the 80 million Americans who have a low level of health literacy are not reaping the benefits of consumer health information technology. Simply opening up medical records to patients is clearly not enough. To get more people engaged, it will likely be necessary to present information in simpler, more useful formats.
It’s also possible that digital health platforms may hold greater appeal for certain groups, including those who can afford technology and have become accustomed to using it in many parts of their lives. Research suggests that wearable devices, for example, tend to be used by healthier, wealthier, and younger individuals. We’ve found that while tech-savvy diabetic patients use platforms like Tidepool to connect and interpret their diabetes data and adjust their insulin dosing as needed, others tend to use the platform only when their physicians ask them to upload their data.
2. Achieving a critical mass of users.
Some health platforms require engagement from thousands, even millions, of people. Ambitious initiatives like the All of Us Research Program and the Health eHeart Study aspire to build massive databases to support research into how lifestyle and genetic makeup affect health and, in the process, advance precision medicine. Yet mobilizing millions of patients to donate their health data over time is difficult.
Though many people register for such trials out of curiosity, relatively few update their data regularly. People may lose interest when they feel they don’t get enough feedback on how their data are being used, how they contribute to the research findings, or how they may benefit. Donating data to science can feel like a one-way street. Giving patients a better understanding of how their contribution is helping them and others may stimulate more sustained engagement.
Some health platforms sustain engagement by enrolling fewer patients but involving them at a much deeper level. Dozens of children with IBD and their parents, for example, participate in the ImproveCareNow collaborative network, devoting hours to working with local clinics, sharing ideas with researchers, and creating resources such as toolkits and blog posts to support other patients. These efforts have not only helped align the priorities of patients and physicians, but they seem to have improved care as well.
3. Overcoming clinician resistance.
Some health professionals may not be prepared to absorb the influx of patient data in their already busy schedules. For example, when the OpenNotes initiative first began encouraging doctors to share clinical notes with their patients, many feared being burdened with trivial questions. But, as it turned out, most patients only contacted their doctors when they had legitimate concerns.
Other clinicians may not know how to address patients’ concerns about how their condition is affecting their daily lives. Inspired by the Swedish Rheumatology Quality Register, efforts are under way to forge new partnerships between patients and doctors. The idea is to enable patients to set the agenda for their visits by uploading their health data beforehand and pinpoint medical and nonmedical issues they want to discuss.
Digital technologies offer a means to connect patients with their peers and create a more responsive health care system. Giving people access to information and control over their own health data can empower them to figure out what works for them and partner with their physician to create a personalized care plan. Now that we have substantial experience with the first generation of digital health platforms, we must use the lessons we’ve learned to make the second generation more engaging, informative, and productive for medical researchers, clinicians, and patients alike.
You can learn more about this research and the health information initiatives we analyzed at transparencyforhealth.ash.harvard.edu.
The authors are grateful to Dr. Victòria Alsina Burgués for excellent research assistance and to the patients and platform leaders interviewed for this research.