The work of being a chronic patient and the Internet

A propos of the Pew Research Center 2013 report “The Diagnosis Difference. A portrait of the 45% of US adults living with chronic health conditions by S. Fox and M. Duggan”

 by Victor M. Montori, MD, MSc

As the epidemic of chronic disease affects more people at younger ages, our knowledge gaps about the work these patients do to achieve their goals are becoming quite obvious. Indeed, we know very little about how much in a day patients with chronic conditions devote to their health. Best estimates suggest 2 hours per day, making patienthood a part time job. What do these 2 hours include? According to seminal theoretical work by Carl May and empirical work by the International Minimally Disruptive Medicine (MDM) group, the work of being a patient comprises of (a) making sense of disease and treatments; (b) enrolling others and planning care; (c) operationalizing care; and (d) monitoring and appraising care.

The latest report from the Pew Research Center (The Diagnosis Difference, Pew Research Center, November 2013) about the use of the internet for health focuses on the self-reported practices, late in 2012, of 3000 Americans, about half of them living with one or more chronic conditions.  This report offers some key insights into how these patients perceive their information-related activities both on- and offline. Some general findings that offer context here include:

•  Socioeconomic disadvantage is more likely among adults with multiple chronic conditions. This disadvantage extends to internet access. Access is quite prevalent (72%) but less than access among healthy adults (89%). Similarly, this disadvantage extends to access to cell phones (not clear from the report what proportion of cell phones are smart phones with internet access). This diagnosis difference contributes to the notion that patients with multiple chronic conditions swim in the deep end of the pool: face the toughest task with least help.
• Having a chronic condition is independently associated with a lower likelihood of internet access.  Less internet access is associated with being older and have less education – both associated with having chronic disease. Yet, having chronic disease itself is associated, independently of age, income, and education, with less use of the internet. I believe this can be considered evidence in support of the notion, central to MDM, that patients are often overwhelmed and as a result experience a marked reduction in capacity to access care resources, including the internet. Their own bandwidth is taxed by the burden of treatment.

We will review these insights from the perspective of Minimally Disruptive Medicine. This approach to medical care seeks to minimize the healthcare footprint on the lives of people living with chronic conditions while advancing their goals for health and life.

The work of sense-making

The report shows that when it comes to making sense of disease and treatments, patients with multiple chronic conditions use multiple sources (81% health professional, 61% friend or family, 27% others with similar conditions). Those with internet access are more likely than their healthy peers to seek information about disease, tests, and treatments, including drug information and disease or treatment experience from others. In finding this information, patients with chronic conditions fact-check this information with their clinician.

The information seeking activity starts via a search engine (80% overall, but only 68% for patients with chronic conditions), although patients with chronic conditions are more likely than healthy people to target Federal health websites and specialized health information websites.

Because many people with chronic conditions also are caregivers for others with chronic conditions, it is not surprising that the report finds folks with chronic conditions looking for health information to help others: half of all searches reportedly are undertaken on behalf of others.

An important finding of this report is that a third of internet information adventures are frustrated by a pay wall. Only 2% of people pay; the others end up looking elsewhere and a full 17% reportedly gave up. That is, pay walls add work (if not financial burden) to the already overwhelmed patients with chronic conditions and their caregivers and reduce access to presumably valuable information.

 The work of enrolling others and planning and operationalizing care

This survey has either not captured in full the activity or the activity related to these forms of work happens offline in a hyperlocal way. Here, for example I would have expected to learn about the efforts people with chronic conditions mobilize to get information and access to support services in their own community, electronic ordering of supplies and renewal of medicines, scheduling appointments, secure emailing with their clinicians and access to their own record. Also, perhaps, access to groups online, including Facebook friends and Twitter followers, who share conditions, challenges, or can offer access to help, caregiving, or other resources. One clue in the report: those with multiple chronic conditions are twice as likely to post personal stories and questions, but this represents only 11% of them. The report does find that patients with chronic conditions, like their healthy counterparts, for the most part do not use rating services for clinicians or hospitals.

The work of monitoring and appraisal

The report refers to health tracking as a formal and informal activity that is more common among people with chronic conditions (reported by 80% of those living with 2+ and 70% of those living with 1 chronic condition). Importantly, some of this activity is formal (mostly pen and paper) and is shared with others (by 39% of trackers), particularly clinicians. For these patients, tracking is fateful: 72% think that their tracking efforts are worthwhile and 51% that tracking changed their management. But also some of this activity is informal (mostly mental tracking, reported by 43% of trackers). Informal tracking is of course more taxing of people’s limited bandwidth and as such represents a unique opportunity to support patients with chronic conditions. The overall underuse of e-tracking tools (~1% of trackers) suggests that these have not reached these users either because of their design, cost, platform exclusivity, or limited link with people’s actual meaning-making goals.

There is also limited social engagement in rating services of clinicians and hospitals which is a pity because patients with chronic conditions are touching the healthcare system at so many different points so many times that they are best equipped with comparison and dose-dependent hassle information. They are the canary in the coalmine. Also they are best positioned to detect improvements in care coordination and prioritization.

Implications for Minimally Disruptive Medicine

This report advances our understanding of the challenges multimorbidity places on people’s capacity either directly or through their work as caregivers to others with multiple chronic conditions. This report is particularly informative in relation to sense-making and tracking. Clearly online information sources play an increasing role for these patients, but still healthcare professionals are key sources for original information and for fact checking what is found online.  Patients are not using paid sources and quality rating services for doctors and hospitals. Tracking continues to be a low-tech and informal activity despite its perceived relevance to those who engage more formally in tracking and sharing tracked information with their clinician.

Extrapolating a bit further away from the data, there seem to be opportunities for those who seek to serve these growing patient population. These opportunities refer to answers to the question,

How could we facilitate the work of being a patient (sense-making, enrolling help and planning care, operationalizing the care, and monitoring and appraising care) by reducing the demands tools to harness the power of the internet and of “the social” place on people’s limited capacity (bandwidth, resilience, literacy, mental and physical health, financial health, social capital, and environmental navigability)?

We shall watch carefully for innovations that answer this question with true value for patients swimming in the deep end of the pool – those most likely to struggle alone with few resources to help them. We should also thank the Pew Research Center for this very helpful report.