People who are diagnosed with at least one chronic medical condition are more likely to seek information online, use social media to understand peer patients' reviews on drugs and treatments, and learn from other patients about their personal health experiences.
While that's encouraging news for a health empowerment headline, the underlying challenge that should prevent congratulatory fist-bumps among patient engagement proponents is that people living with chronic disease are less likely to have internet access. Why? Because chronically ill people tend to be older and less educated, and they're also less likely to be working. Simply put, "People living with chronic conditions continue to lag behind other U.S. adults when it comes to information and communications technology adoption."
Once connected to the web, though, there's The Diagnosis Difference, according to Susannah Fox and her colleagues at the Pew Internet and American Life Project. That difference is that sick people with internet access become more engaged with their personal health information, and share that information with doctors and other health professionals more than people who don't have a chronic condition.
People with chronic conditions also more likely self-track observations of daily living like weight, diet, sleep and exercise, along with their medical metrics (blood pressure, heart function, blood glucose). And this tracking and health note-taking makes a difference for these people, who say doing so has a real impact on their health or the health of those for whom they are caregivers.
Across all people, sick or not, seven in ten U.S. adults look online for health information. But people with at least two chronic illnesses are more likely to seek information online on diseases or medical problems than folks with no chronic condition, a difference of 62 percent versus 52 percent. There are large differences in health information seeking behaviors in chronically ill vs. healthy people especially for:
- Specific medical treatments (53 percent vs. 41 percent)
- A drug you saw advertised (20 percent vs. 13 percent)
- Drug safety or recalls (21 percent vs. 15 percent)
- Medical test results (18 percent vs. 13 percent), among others
These health information searches continue to be done mostly via search engines, including Bing, Google and Yahoo!, a consistent finding in the Pew data for over 10 years. But sicker people tend to start their searches at more health-specific websites such as WebMD (20 percent vs. 12 percent). Free sources are far more utilized than health information portals that charge for information access. The math is stunning and crystal-clear: among people with chronic conditions,
- 80 percent encountered a pay wall (charge for access) and then tried to find the information elsewhere
- 17 percent of people gave up
- 2 percent eventually paid the fee
Overall, one in four U.S. adults live with at least one chronic condition, and one in five live with two or more. After assessing the overall U.S. population's approach to seeking health information online and self-tracking, Susannah and team also looked into specific health conditions' impacts on peoples' use of the internet and tracking for health; the sample in the study addressed:
- High blood pressure, occurring among 25 percent of U.S. adults in the survey sample
- Lung conditions, managed by 13 percent of U.S. adults in the forms of asthma, bronchitis, emphysema and other lung issues
- Diabetes, among 11 percent of U.S. adults
- Heart conditions, for 7 percent of U.S. adults (e.g., heart disease, heart failure, or heart attack)
- Cancer, among 3 percent of the adult population, and
- Other chronic conditions, for 16 percent of U.S. adults
The survey was conducted among 3,014 U.S. adults via phone (landline and cell) in August-September 2013.
Health Populi's Hot Points: Getting and being sick changes everything in your life, and that includes how you project-manage your health. People diagnosed with more chronic conditions seriously seek information, and they also take that information seriously and tend to share it with their medical advisors.
But above that finding is the larger issue that, for people focused on so-called patient engagement, health empowerment, and social networking in health, is the elephant in this room: that most people simply don't self-track health via digital means (via computer, mobile platforms) which are more efficient and effective for enabling long term behavior change and, ultimately, better health outcomes.
From a policy and payment standpoint, let's turn to Judith Hibbard, who calculated that people who are more patient-activated cost their health plans fewer dollars (research published in February 2013 issue of Health Affairs devoted to the theme of patient engagement). Figuring out how to get internet access to sick people is a strategically useful tactic in the value-based payment era of health care reimbursement.
One example of this in real life is TracPhone's and Voxiva's partnership to provide free phones and health messaging to people enrolled in Medicaid programs. The Commonwealth Fund published a paper earlier this month about the merits of promoting mobile health apps to people management diseases. And NEHI assessed eleven applications to help people manage chronic conditions, looking at cost-effectiveness.
That's the supply side of how to provide internet access and tools to people managing chronic conditions. However, the demand side is the other half of the equation, and the numbers on people with chronic diseases keying into peer-to-peer, social online health resources remain fairly low when you dig into the Pew report's latter chapters on specific health conditions and just how few people take advantage of these tools. Further research into the "why" behind the lack of greater social-health engagement for the mass-middle of people with chronic conditions is needed. We need to remember that managing a chronic condition can feel like a full-time job in itself. How can social-health resources help that individual's health management workflow to be more streamlined, more empowering, and in a word, easier?
This post originally appeared on Jane's blog, Health Populi, on November 26, 2013.