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.
Another hit by James McCormack is out on youtube.
This time, James has applied his talent to the idea of Minimally Disruptive Medicine. In this version, he asks healthcare professionals to make the treatment workload easy on patients and their caregivers. Yes!
Its fidelity to the concept and the perfect combination of pictures and song, make this an instant classic.
Pass it along and help us disseminate Minimally Disruptive Medicine. Make it easy!
By Aaron Leppin, MD
I am not particularly mechanically oriented. I know very little about how my car works and what truly needs fixed and maintained. It is hard for me to fully appreciate the risks associated with rotating the tires vs. changing the oil vs. flushing the transmission, inspecting the spark plugs, repairing a dent, fixing a cracked windshield, replacing the brakes, and so on. What I know is that I do not have the time or the desire or the money to do every possible thing to my car at every possible opportunity to keep it in pristine condition. If I attempted, I am certain I would go crazy from the burden of it all.
Fortunately, my mechanic knows this. We have a partnership whereby I am loyal to his auto shop and trust in his guidance, and he provides a service that fits my life. He does what needs to be done on my car to meet my fairly straightforward expectations—that I have a safe and reliable vehicle that can get me where I need to go when I need to get there.
Squeezing out a few extra RMPs of performance or maximizing my fuel efficiency by a couple miles per gallon or removing an imperfection in the finish simply are not things I care to pursue unless he can ensure that the effort and resources required to accomplish these ends are minimal. In other words, these things simply do not mean enough to me that I would sacrifice my time, energy, or finances to make them happen. I have far more important objectives and goals for my life toward which I can direct those resources.
I’m sure there are people that care much more about their automotive performance than I do and for them a totally different approach would be necessary. And that is the beauty of providing a service. A service is flexible, it is responsive, and it is consumer-driven. No auto “service” shop will be in business long if it focuses its efforts on providing services that no one needs or wants. After all, people do not generally take their cars to the mechanic because they have an intrinsic desire to experience the process of it all; rather, they have specific areas where support is required that exceeds their own particular abilities, knowledge, or resources. The “service” shop helps meet those needs.
When we consider the implications of a service-first approach to health care, we often focus on quality metrics that reflect the patient’s experience of interaction with the health care system. This is certainly not wrong and is in fact an important part of what it means to be truly focused on patient goals. But, conceptually, the idea of a service shop view of our clinics, hospitals, and health systems should really extend far beyond the façade of experience and, in truth, be grounded in the actual substance of what it is we do. In that sense, we have to ask ourselves if the care we are providing is actually a service. And when it is not, what is our justification for making it anything else?
The U.S. Bureau of Labor and Statistics uses a simple classification scheme that dichotomizes the total of all American industry and productivity on the basis of a single consideration—namely, whether a field or sector is primarily “goods-producing” or “service-providing.” Healthcare and social assistance finds itself classified in Sector 62, within the service-providing group and cozily nestled between the feel-good fields of education services (Sector 61) and the leisure and hospitality sectors of arts and entertainment and accommodation (Sectors 71 and 72, respectively). This seems like an appropriate and desirable place for healthcare to reside, comfortably situated among the altruistic, the noble, and the joy-bringing.
At least in a theoretical sense, the ability for healthcare to remain justifiably classified as is depends on the idea that what it generates comes from and is directed by the demand and desires of the people it serves. And this too seems appropriate. After all, we would not say that we “produce” healthcare, but rather that we hope to “provide” it. Similarly, we would prefer not to say that we create a take-it-or-leave-it product available for consumption; but rather that we respond to the needs of patients. And, although I firmly believe in the genuinely good intentions and generally well-placed priorities of America’s healthcare policies and people, I think we all know we could do better. For all our best efforts, after all, there’s something about healthcare that occasionally makes it seem like a fraudulent servant, as something with good intentions but still driving to produce a product.
To the extent healthcare imposes itself on those it serves and becomes burdensome, pushy, and overbearing, it ceases to become a service at all—rather, it very much becomes a disservice. We do not often think of healthcare for what it is, or at least what it is intended to be fundamentally: a service provided to patients.
It may seem strange to think of one’s physician in the same light as one’s hairdresser or one’s pharmacist in the same way as one’s accountant—but should it? Perhaps not entirely. To the extent healthcare itself dictates the character and nature of its product, it becomes “goods-producing” and, according to the Bureau of Labor and Statistics, would better be lumped with the likes of the manufacturing or agricultural sectors.
New ways of thinking about healthcare are emerging that are seeking to empower patients with the negotiation tools they’ve always rightfully owned but not fully realized. Through the broadening reach of shared decision making, patient values and preferences are being called upon to dictate the application of healthcare in a way that is personalized and patient-driven. Furthermore, there is growing acceptance that clinical guidelines, often fail to guide the provision of service that meets the needs of some patients in some circumstances.
Minimally Disruptive Medicine is a service-driven approach to care, co-created with patients (as is the best experience at any service), that makes sense for patients and meets their goals with evidence-based approaches, in a manner consistent with their needs and preferences. It is what patients would order for themselves at the drive-thru, it is what they would select from the produce aisle or the art gallery, and it is the part of their house they would choose to remodel if left to their own devices and were sufficiently informed.
Minimally Disruptive Medicine is minimally disruptive not because it is minimal, but because it is designed to naturally fit to the patient’s life. In some cases, this may require maximal support and intervention, but that determination is made by the individual needs of the patient and the particular clinical situation, with the patient. MDM seeks to always support and never burden beyond what is necessary to achieve the patient goals.
As I have spent the last few months researching the merits of a Minimally Disruptive Medicine approach to care and growing in my own understanding and conceptualization of the construct, I’ve become familiar with some of Victor Montori’s favorite nicknames: “Goldilocks Care,” “Palliative Care for the Living,” “Geriatrics for the Young,” etc. Well, insomuch as I am qualified to propose another, how about: “Service With a Smile.” That’s what I get from my mechanic. Why should I expect anything different from my doctor and healthcare team?
There are times when a doctor knows he’s doing the wrong thing and does it anyway. I’ve done it quite often. This happens when I order laboratory tests for no good medical reason. I am ordering them just to help my patient get their operation or procedure.
A 68 year old man comes to see me for cataract surgery. He has some diabetes which is well controlled with oral medications, and some mild hypertension.
The ophthalmologist’s office sends a piece of paper with him. He needs an EKG, a metabolic panel, and anticoagulation studies. None of this, of course, has anything to do with his cataract surgery. Indeed, if you look up the recommendations of the ophthalmologists regarding cataract removal, they say no labs are needed in a comparatively healthy man.
I grumble, grind my teeth, and then…I order the labs. If I am feeling particularly frustrated, I explain to the patient that I am ordering these labs just to make sure the procedure happens as scheduled, but I don’t think they are medically indicated. I am not sure the patient ever understands what I am talking about when I give this little speech.
What is wrong with these labs, anyway? First, of course, it’s the principle of sticking a needle in someone’s arm and taking blood for a test which is not of any use. Second is that labs can lead to harm. A false positive can lead to more testing, labeling, anxiety, and significant morbidity from the vicious cycle of diagnosis-treatment-side effect which we are so often mired in.
If that’s the case, how do we change matters? That’s something I don’t think anyone’s figured out yet. I played a small part, through the National Physician Alliance’s Top 5 lists of most commonly done useless and potentially harmful procedures, in the birth of the Choosing Wisely movement, which has since been publicized by the American College of Physicians and the American Board of Internal Medicine Foundation. But limiting preoperative labs is actually not part of this campaign.
This is such a difficult problem to fix because it involves everyone at once. The specialist requests these tests because that’s the way it’s always been done, perhaps just because they still have 750 copies of the pre-op handout. The receptionist in their office wouldn’t understand if an internist raised a fuss; she might likely think that the doctor was just being a jerk, and then the patient (caught in the middle, as usual) would not get their cataract removed as scheduled. Then everyone would be annoyed at the doctor who got in the way.
As usual, it’s easier to go along and get along, even at the price of unnecessarily disruptive and unneeded procedures. Can we all sit down together and try to wean ourselves of the needless INRs?
How patient-clinician communication can promote minimally disruptive medicine via shared decision-makingPosted: July 5, 2013
How can we get more clinicians to help the patient receive minimally disruptive medicine? The answer might lie in the improvement of patient-clinician communication. For many conditions, the doctor is encouraged to look into the book – or, more likely, UpToDate – and read out the recommendations of the latest guideline.
But there are two limitations to guidelines. The first, of course, is that all guidelines, whether from the United States Preventive Services Task Force or the International Association of Quackery, are only as good as the methodology and evidence that go into them. The second is that even the best guideline is not a magic recipe for appropriate care for the individual person in question.
If you are discussing screening for prostate cancer via the PSA test, whether you are a patient or provider, you will surely realize that the guidelines of the urologists and internists are now in rare agreement: universal screening is not recommended. What is now recommended is shared decision making, a series of tasks that patients and clinicians do together to communicate about the options and to deliberate to identify the one that fits best with the patient preference and context.
Whether it’s prostate cancer, diabetes, or depression, how can we bridge the gap from guidelines to individually sensitive care? I think there are two steps. The first, as I outline in my book, is to build a relationship between PCP and patient that can handle the intellectual and emotional stresses of decision making with unclear information. This requires mindfulness; emotional readiness; and specificity and clarity of options.
The second step is to contextualize clinical recommendations in a way that only good communication makes possible. Such contextualization is now being addressed by some fascinating new research. We have already known, through the work of communication researchers (chief among them Debra Roter), how to characterize a true dialogue between patient and clinician.
Unfortunately, the evidence is mixed as to the extent to which such dialogue leads to improved outcomes. In their recent work, Saul Weiner and colleagues at the University of Illinois at Chicago, and at Duke University, try to determine how often physicians take the next step after good communication: using an appreciation for the patient’s individual concerns and customizing their recommendation on that basis. It’s not enough to empathize, in other words, about someone’s job loss, poverty, broken family, or inability to navigate our health system: the doctor’s care must respond to those individualities. They find that physicians who manage that customization offer care which is more appropriate to an individual’s given situation (here is a video that demonstrates “red flags” about contextual issues designed to prompt clinician response, which rarely took place).
We know that maximally invasive care is often a shortcut taken by physicians (and patients) overwhelmed by the complexities of possible options, and daunted by the challenge of modifying medicine to a person’s unique needs. Contextualizing care through good communication can give us permission to be minimally invasive when appropriate, hopefully for the benefit of person and system alike.
Zackary Berger, MD, PhD, is an internist and researcher in doctor-patient communication at Johns Hopkins General Internal Medicine in Baltimore. He is particularly interested in the role of the primary care provider in cancer control. His book, Talking To Your Doctor, is out on July 16th, 2013.
The geniuses at the Therapeutic Education Collaboration, James McCormack and Michael Allan, had me on for their BS Medicine Podcast. They dedicated their SUPERLATIVE episode to minimally disruptive medicine. It was fun(ny) and we hope informative. They offer multiple ways to enjoy their podcasts, but the most direct one I can see is here.
David Eton has led a team of researchers in summarizing existing tools to measure the burden of treatment. The paper was just published. Measuring burden of treatment is one of the cornerstones of minimally disruptive medicine. Making patients and clinicians aware of the burden of treatment might be helpful in moderating the intensity of treatment to ensure it matches without overwhelming the existing capacity of the patient and caregivers. Let us know what you think of this important review.
The last few weeks have seen a surge in discussions in the press about minimally disruptive medicine. The Wall Street Journal had a piece as did the Star Tribune in Minnesota here. This press in turn has led to a number of people to reflect about healthcare and to contact our research team to test the model out.
Meanwhile two teams are working on measuring treatment burden, and two reviews are considering how the Cumulative Complexity Model can help understand the (in)efficacy of lifestyle modification interventions and readmission prevention interventions. Much to do everywhere to lift the burden off patients with multiple chronic conditions.
Importantly, I think, our group has been producing some synonyms that begin to draw in the mind’s canvas different paths toward Minimally Disruptive Medicine:
- Palliative care for those far from the end of life – focus on quality of life, function, symptoms, in achieving patient goals
- Geriatrics for the young – be parsimonious, mindful of comorbidity and limited capacity (the younger parallels with frailty and life expectancy)
- Goldilocks (not too much, not too little, just right) – it is not only about reducing healthcare, it is about optimizing the healthcare footprint making sure that under use of desirable interventions is addressed as well.
- Wellness for the sick – emphasize function to increase capacity as part of the strategy to reduce treatment burden.
- Lean consumption for patients – maximize the efficiency of the work of being a patient.
What other parallels can we draw? What else could we learn about these disciplines?
The quest to reduce the healthcare footprint on the lives of individuals and communities presses on. The response from the audience at the 2013 ICSI Colloquium in St Paul, MN was quite telling: clinicians wondering how to overcome the impotence they feel as they comply with guidelines, care processes, and public reporting that they feel makes them deviate from patient goals; patients echoing my call for patients to lead a revolution in healthcare. Indeed, a patient from Texas, who pertinently had the last word at that ICSI presentation, made an impassionate plea for change, for patient-centered care, for minimally disruptive medicine. She then proposed: Let Patients Lead. This moved me and reminded me of a friend’s friend who in reviewing the concept said that he felt this should be renamed Maximally Generous Medicine. Another synonym to inspire our journey.
Juan Irigoyen ha escrito un excelente testimonio que subraya la importancia de reorientar la medicina para pacientes crónicos hacia formas mínimamente impertinentes. Aquí su excelente ensayo: Derivas Diabéticas
Caregiver Corps: Tapping A Nation of Caring People
By Janice Lynch Schuster
I recently participated in a Twitterchat (#eldercarechat), where someone raised the question of what we want government to do to improve the lives of the nation’s 60 million family caregivers. Someone suggested creating a Peace Corps-like program to recruit new graduates to serve family caregivers. I immediately volunteered to launch a petition to do just this, and wrote one on the White House website, which encourages civic engagement.
My petition is very short. It seemed to me that in the context of trying to raise interest and garner signatures, I needed to be to the point (http://wh.gov/GURc). It reads:
We petition the Obama Administration to: Create a Caregiver Corps that would include debt forgiveness for college graduates to care for our elders.
More than 60 million Americans are family caregivers. They face challenges: Health suffers. Finances suffer. Families suffer. Aging Boomers will overwhelm our caregiving resources. Let’s create a Caregiver Corps, that would marry college debt forgiveness with programs that place recent graduates with families and aging services providers. Let’s bridge the generational divide that promotes ageism. Let’s do it!
One of my Twitter followers admonished me for my lack of detail. Without it, she said, no one would would take me seriously. The idea is in its early stages, and would require thoughtful analysis and number-crunching by experts. But in the meantime, here’s the general idea for it.
Why We Need a Caregiver Corps
Several demographic trends are creating a future that will leave families and our beloved elders overwhelmed, exhausted, and bankrupted by the challenges of living with old old age–that is, living past 80–with multiple chronic conditions that will, no matter what they do, kill them. In any given year, some 60 million Americans serve as family caregivers to another adult, someone who is either old, disabled, or both. (And millions more care for children and young adults who live with serious disabilities, and face even more challenges in terms of education, employment, and so on.)
These families will run square into a medical system that is not prepared to care for them in the ways the need most. These individuals might sometimes need rescue and cure—but they will more often need long-term supports and services, and help with things like transportation, hygiene, and food. And while they’ll have plenty of access to ICUs and new hips and knees—they will be shocked and disheartened by the costs of all the things they will need to pay for on their own: private-duty nurses, for instance, and home care; transportation and food and skilled nursing care. Unless these families spend-down to become Medicaid beneficiaries or have adequate long-term care policies, their costs will be out of pocket. And those costs will be beyond reach for most middle-class Americans.
In the meantime, the social services agencies meant to serve aging Americans continue to be devastated by short-sighted budget cuts. Sequestration alone, one estimate suggests, will eliminate 800,000 Meals on Wheels in the State of Maryland.
And there will be few people to provide the hands-on care that these adults will need. The nation faces a profound shortage of people trained in geriatric care, from geriatricians to nurses to direct care workers. These shortages stem, in part, from the relatively low pay geriatricians earn, and the outright unlivable wage direct care workers receive. By one estimate, by 2030, when all of those Boomers are in their dotage, there will be one geriatrician for every 20,000 older adults.
A Caregiver Corps: Hope—and Help–for Us All
What’s a country to do? Launch a Caregiver Corps, a program modeled on similar valuable, successful, and long-lived efforts, such as the Peace Corps, AmeriCorps, VISTA, and Teach for America. The program could recruit volunteers: high school graduates not trained for the workforce; college graduates facing a tough economy and huge undergraduate debt; and older adults, those healthy enough to want to remain in the workforce and contribute to others’ well-being.
Volunteers could sign up for a year or two. In exchange for their service, they could earn tuition credits to cover the cost of college; they could receive some degree of loan forgiveness, to lessen their burden of debt; they could be paid a stipend that acknowledges the value of their work. They could be assigned to community-based organizations that serve older adults, such as Area Agencies on Aging, non-profit health care institutions, social services agencies, and others.
While volunteers could offer enthusiasm, compassion, and insight, they could also learn the kinds of skills required to care for an older adult and his or her family. They could learn about the public policies that affect that care. They could acquire medical and nursing skills—the kind of skills family caregivers use routinely in their daily routine. They could be exposed to older people, and bridge the generational gap that splits our country on this demographic. In the end, they might even be inspired to pursue a career that features caring for one another.
That, it seems to me, is something Americans have always done best—and will have to do more, as we all reach our own old age. Developing people who have the skills, resources, and motivation to help us in our self-interest. And it is in theirs, too. Millenials face the highest unemployment of any group in the country, and finding ways to become marketable, employable adults is critical to their own security and future.
So, let’s try it. Let’s create a Caregiver Corps. Let’s get the Administration to think about it, and weigh in. It’s time, really, to move forward. We need 150 signatures to push the petition to the public pages of We the People. Please take a moment to add yours:
Janice Lynch Schuster specializes in writing about aging, caregiving, and end of life issues, and is a co-author of an award-winning book on the topic, Handbook for Mortals: Guidance for People Facing Serious Illness (Oxford University Press, 2012).