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.
Our team has been playing with some mock designs of interactive tools to support care plans and achieve important reductions in burden of treatment.
Also, we are impressed by some online networking tools (e.g. Tyze) that can rally support for the patient-and-caregiver team and perhaps be used to increase their capacity to take on whatever work is left to do, improve their resilience, and enhance their performance. Patient and caregiver are already doing this dynamically (see figure) but they would benefit from their “village”.
We are actively working to make MDM a reality in our primary care practice. A key step involves identifying patients who may benefit the most from MDM, or the most intensive form of MDM at least.
After some discussion we came out with this list (order does not necessarily implies importance)
- Patient has a complicated treatment regimen and is overwhelmed by it (as judged by self report, nonadherence or other strong clue)
- The current form of care does not meet the patient’s needs
- The patient’s health is at risk of a health catastrophe if we do not take action
- The patient is willing to invest in MDM work with the goal of achieving the patient’s goals for life and healthcare while reducing the burden of treatment (the imbalance in patient workload to patient capacity)
The blog Bedside Manner recently echoed our sentiments about minimally disruptive medicine, yet making a novel point: it is not about less care, but about more patient-centered care.
Indeed, I have come to refer to this idea as ‘goldilocks’ medicine for that particular reason. It is care that is “just right” as it can only be defined by the patient-clinician dyad (ultimately a dyad of teams on each side really) with the right expertise and research evidence, the right understanding of the patient’s context, and the right consideration of the pertinent and informed values and preferences.
Goldilocks medicine is going to need not only changes in the environment of care (fundamentally changing the corrupt nature of healthcare delivery today), but also in clinician training and in shaping patient expectations for involvement.
Thank you, Julie Rosen, Executive Director of The Schwartz Center for Compassionate Healthcare, for bring up MDM in your blog!
In April 2011, Minnesota Physician published a cover story about minimally disruptive medicine. To read the article click here. We look forward to learn how Minnesota physicians and other health professionals think about minimally disruptive medicine as we try to develop and spread this model to help patients who are overwhelmed by their life and heatlhcare yet experiencing poor health and health outcomes.
by Victor Montori
I have just spent a glorious week with colleagues in the UK who are all pioneers in formulating a sociological theory of work called Normalization Process Theory. We were brought together by the very generous Carl May, the convener of this group and key intellect along with Tracy Finch, Tim Rapley, and several others behind NPT — all “eminent, esteemed, and lovely”.
I was given the opportunity to share some notes about fitting healthcare to the patient using shared decision making and minimally disruptive medicine and how we were using NPT to support this work. My presentation is here:
The NPT toolkit boils down the theory into 16 questions. The point of working thru these questions is not to reach an answer, but to think through — while addressing these questions — the process by which an intervention, a study, a treatment will become implemented, enacted, embedded, i.e., normalized, into existing routines. The questions are challenging and invite thoughtful discussion. I want to start using these with patients to uncover the work of adhering to complex medical regimens.
The developers are anxiously waiting for users to provide feedback and promise to be responsive. Since this is the theory underpinning minimally disruptive medicine, my enthusiasm for a toolkit that will make it more accessible to practical people is very high.
The other attractive feature of the toolkit is the resulting report. While this gives a sense of “destination” — when I say above that the “journey” is where the value lies, the plots suggest the notion of footprint that I have found so critical to understand healthcare in the lives of patients.
Go explore the site and post comments there and here.
The great folks at the Mayo Center for Innovation have published last year Transform symposium talks on youtube. These include the first public presentation about Minimally Disruptive Medicine and Maggie Breslin’s classic on the power of conversations in healthcare.
What has happened in the last year? Our international research team continues to work hard to define the concept of treatment burden for patients and caregivers and make it measurable, we are looking into clinical visits video recordings to explore the nature of these conversations, and we are working with partners to further consider these goals in initiatives such as the patient-centered medical home. Lots to do!
What is Fit?
The single most important reason why it is important for a treatment to fit is that patients have the single largest stake in the treatment. It is the patient who will have to schedule the visits, take the medication, monitor his or her health, adjust his or her lifestyle, and deal with the effects of either the disease, the treatment, or both. These burdens of disease and burden of treatment must be managed using the resources of the patient and often his or her social community. The patient must have the capacity to cope with the demands of a treatment regimen in order for the treatment to help achieve a health goal. A good treatment fit with minimized treatment (and disease) burden are especially important for patients with at least one chronic disease, as the patient’s commitment to treatment can last a lifetime and the cumulative burden of disease and treatment can become very large.
The problem with many prescribed treatments is that the treatment must be used as directed in order to achieve the desired health outcome. Patient adherence, therefore, can be a major determining factor in whether a treatment will be able to achieve the doctor and patient’s goal. In addition to the decrease in benefit from treatment when adherence is low, additional side effects, complications, and doctor visits can result. Such consequences, which can result when disease management is poor, create an additional burden of disease and/or treatment for the patient, the community, and for society. Since adherence to treatments and the ability to cope with treatment burden can have a large effect on treatment outcomes, prescribed treatments should be chosen to fit a patient and to be minimally disruptive (or minimally burdensome) in order to allow for the best chance of reaching a health goal.
For a visual image of the way that I picture fit and minimally disruptive medicine, picture Venn diagram of three overlapping circles.
Each circle represents an important factor in choosing and implementing a treatment: on circle is the domain of the patient’s goals, on circle is the domain of the doctor’s goals, and one circle is the capacity of the patient to cope with or adhere to a treatment. At the intersection of all three domains is treatment that fits, and the practice of minimally disruptive medicine. In a perfect world, the doctor and patient would agree on all goals for treatment and disease management, and all of the possible treatments that would accomplish this goal would be within the capacity of the patient. In the real world, we must use different tools and ways of practicing medicine to determine the shared goal with as much agreement as possible between doctor and patient, and to find treatments that are within the capacity of the patient and can be accomplished using the patient’s available resources. This would mean working in the “zone” of treatment fit and minimally disruptive medicine, and allow the greatest chance of successfully achieving health goals.
Many different interventions have been developed which aim at improving health with the primary goal of increasing patient adherence and thus the efficacy of available treatment options. While many practices, including evidence-based and patient-centered medicine, include the aim to bring the doctor and patient to an agreed upon and effective treatment, specific tools have been developed to aid in setting these goals and prioritizing the characteristics of available treatments for the patient. These attributes include the efficacy of the treatment, various burdens of administration or monitoring of the treatment, side effects, cost in time, money, and resources, and access. Tools for helping to fit a treatment include decision aides, which give doctor and patient and systematic and inclusive approach.
Countless other interventions to improve treatment adherence address the issue of capacity by either increasing the patient’s resources available to use toward treatment (i.e. providing childcare, accompaniment to appointments, transportation, reminders) or by decreasing the burden of treatment to adjust for the patient’s capacity (i.e. scheduling fewer appointments, reducing costs, etc.) In some cases, treatment or outcome goals are adjusted so that the treatment necessary to accomplish them is within the capacity of the patient. Decisions to modify treatment or outcome goals must also take into account the possibility that while treatment burden may decrease as a result, the burden of disease increase in the short- or long-term as a result.
The practice and pursuit of finding a treatment that fits by shifting the doctor and patient goals as well as by addressing the patient’s capacity to cope with or adhere to a treatment is the practice of minimally disruptive medicine. In minimally disruptive medicine, the most important objective should be to treat or manage disease so that the patient has the best chance of leading the life that he or she wants with minimal disruption due to disease or treatment. I recently began the long journey of medical school because I want to spend my life helping others to address health problems in order to use time an energy towards other priorities, and in minimally disruptive medicine, I hope to find a fit.
– Hannah Fields, Mayo Medical School
Jill Adams has written a very nice piece about the challenge before patients with type 2 diabetes seeking to decide how much they need to do to manage their disease and prevent complications. The piece goes further and cites our group in seeking “good enough” diabetes control and mentions the work of being a patient. Ms. Adams writes:
Montori notes that a good-enough blood sugar strategy would also ease the sheer time and energy it takes to manage diabetes. Treatment regimens — with frequent doses of pills or insulin, blood-sugar monitoring and doctor visits — are complicated and burdensome, particularly in patients who may be elderly and have other chronic conditions, such as high blood pressure and high cholesterol. One estimate of the time patients spend taking care of their condition, if they follow all the advice of their doctors, is 143 minutes per day. “That’s as much as a part-time job,” Montori says.
The link to the full article (LA Times, Oct 26 2009) is here
Focusing on the patients’ experience of treatment may lead to a new understanding as to why some patients cannot, despite their willingness and knowledge, follow treatment recommendations. Our team is exploring the aspects of treatments that may constitute treatment burden. Do you have some ideas?
For instance, in the United States, patients may need to spend time on the phone, sending letters and faxes, and waiting for responses to obtain new medications, refill other ones, and deal with denials of coverage by their insurer.
Are there ways in which the healthcare professionals can help patients by providing adequate assistance and by modifying the regimen to minimize this form of treatment burden? How would they know if they have been successful? Who are the professionals best suited for this work? Social workers, pharmacists, lifestyle coaches, nurses, and physicians working in teams alongside the patient and their caregivers? Utopia? No, we think this is reality just around the corner. Can minimally disruptive medicine teams positively improve the value of healthcare delivery? What are your thoughts?
One very astute opinion leader, Gary Oftedahl, is finding this compelling. Read his blog here. He notes:
If we in health care are unable to make simple changes in workflows or processes within our care delivery systems, how can we expect our patients to make often complex, and complicated changes, which disrupt a life-long pattern of activity?
What do you think?