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?
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
In a fascinating account, and writing for the Altarum Institute blog, Janice Lynch Schuster reveals her discovery of the work of being a patient and relates this to our conversation about minimally disruptive medicine. This is among the best written accounts of MDM available and I highly recommend it.
On a personal note and in response to Nathan Shippee’s comment to the article, she adds:
The approach makes so much sense to me–both personally, in my own experience, and more generally, when I think of what it means for people to live with multiple, long-term chronic conditions. I appreciate the point you make, about workload-capacity imbalances increasing over time and presenting even more hurdles for patients. I wonder how people can address these imbalances — or how their clinicians can help them to do so.
The call for action is there. So much to do.
We have discussed how caregivers share in providing capacity to patients with multiple chronic conditions. We have also discussed how blind usual care is to the role (and health) of caregivers. In this excellent interview in the Prepared Patient forum blog, Gail Hunt, president of the National Alliance for Caregiving, speaks of the demands placed on caregivers by the healthcare system, of some efforts to pay attention to this and improve outcomes. In minimally disruptive medicine, we need to match demands to capacity and in considering the capacity, we need to focus our attention on both patient and caregiver. This view from the caregiving community adds face validity to these efforts. Well worth the read.
by Stephen Evans, MD (geriatrician, New York)*
A dilemma exists in implementing the role of Care Navigator, when that care management role includes translation of medical treatment choices for patients and their families; how is the Navigator to assist patients/families to understand when an intervention is more or less likely to cause overall benefit or harm, especially in the usual situation of multiple simultaneous co-morbidities?
Physicians know (or should know) that, as people age and accumulate disabilities, more aggressive interventions may be as likely to cause harm as benefit. We call this transitional time in patients one of increasing frailty, in which frailty is defined as vulnerability to adverse clinical outcomes; I wonder if taking frailty into account might make the Care Navigator’s job clearer in the Minimally Disruptive Medicine care model.
Several studies have shown that frailty in either of two constructs (the Hopkins/Fried Phenotype or the Rockwood/FI-CGA) predicts quite powerfully patients’ likely benefit or harm from interventions. It’s easiest to think of “vitality” or normal adult functioning as one end of a spectrum, with “frailty”, with decreasing functioning at the other end, and the challenge is to assist a patient/family to understand where the individual patient sits on that continuum of vitality-frailty; placing a patient on that spectrum makes it easier to consider the likely benefits/risks of treatment.
Our group uses the FI-CGA, which has a wider mathematical “spread”, allowing more nuanced measurement of a patient’s frailty in this way. We use the patient’s score to contextualize shared decision-making among patients/families and caregivers.
So, a patient who is “vital” (not frail, such as, for example, the 95-year-old still playing tennis regularly) has a much better chance of a successful outcome with a hip fracture repair than a frail 75-year-old with a history of stroke with dementia, depression, and physical disability. At the same time, no tool, including the FI-CGA, predicts which patients will do well or poorly at different levels of frailty or vitality, so we try never to say “you should” do one thing or the other. Rather, we outline the choices, the patient’s frailty, a ballpark sense of what the patient’s status could be with or without the intervention, and then try to help the patient/family determine which treatment choices they prefer given the attendant risks and benefits of treatment or non-treatment of acute or chronic illness.
Studies published recently suggest that frailty measurement may be the best way to assist geriatric patients/families and caregivers to understand their risks and benefits before embarking on treatment; frailty may assist Care Navigators in their management/translational roles as they apply the Minimally Disruptive Medicine care model to these patients in the future.
*Disclosure: Dr. Evans is founder of Videx-US, a company that offers clinical decision support software for elderly patients based on the Rockwood/FI-CGA to place patients in the vitality-frailty continuum.
by Allison Verdoorn
Designer researcher, Mayo Clinic Center for Innovation
Meet Susan and John. They are an active retired couple who enjoys traveling and visiting their grandchildren. John has multiple chronic health conditions including diabetes, high blood pressure and arthritis. Susan serves as John’s primary care giver and manages his medications and health conditions. The amount of work they must do to deal with John’s medical conditions is in balance with their capacity to do that work and achieve their larger goals.
In the Minimally Disruptive Medicine care model, John is assigned a Care Navigator, Frank, because of his multiple chronic conditions. Frank works with Susan and John on a frequent basis both by phone and in person to address any issues John might have either socially or medically. Frank is especially interested in any goals the couple has like traveling and losing weight and takes care to make sure any care plan is in line with the goals. Frank has access to a database of social service connections and is a member of John’s health care team so he is able to relay relevant information back and forth from John and Susan to John’s care team.
John suffers a stroke that hospitalizes him.
In the traditional medical model, John is seen by multiple specialists, each with different plans of care, diets and medications. Often these visits take place when Susan is not able to be present and the couple is left to reconcile all of the information they were given when John is released from the hospital. While his capacity has been reduce by illness his workload has increased with new diets, medications and plans.
In the Minimally Disruptive Medicine model John is cared for by a care team that includes physicians, dietitians, pharmacists, social workers, nurses, a care manager and care navigator. This care team consults carefully with specialists to ensure that a cohesive plan of care that aligns with John’s goals and work capacity balance is developed.
A care manager, Lucy, works with Frank, the care navigator, to ensure that the clinical goals of the care team work with and not against John and Susan’s goals and desires. The care manager serves as a counterpart to the care navigator as a liaison to the clinical team.
John is released from the hospital.
In the traditional medical model, John is sent home with a confusing dismissal summary, multiple new medications, conflicting diet plans, and two different rehab programs. John and Susan are unsure who to contact for follow up questions and instead try to make due as best they can with the information they have. Both John and Susan’s work to care for John has been increased while John’s capacity has been greatly reduced due to his illness.
In the Minimally Disruptive Medicine model John and Susan leave the hospital with a care plan that was discussed with them before leaving. The care plan is sensitive to the goals John and Susan are striving towards and includes contact information for their care team. John and Susan can call Frank with questions and concerns and Frank provides them not only with clarification but also community resource connections. Frank reports information directly to Lucy who is able to relay updates to the care team on a regular basis. Frank pays special attention to the couple’s work capacity balance.
In the traditional medical model, John’s health continues to decline and the stress of the situation and caring for her spouse begins to affect Susan’s health. The work she must do for John is a huge burden for her.
Susan feels she is becoming depressed and is no longer able to function at the level she had before the hospitalization. Because of this Susan’s capacity to do the increased work is reduced.
As Susan falls into a depression her ability to care for John is reduced and John’s health declines further.
With few resources, John and Susan continue to manage their declining health on their own.
In the Minimally Disruptive Medicine care model the care team continues to meet regularly even after John’s release from the hospital.
Physicians, nurses, care managers, care navigators, pharmacists, social workers and dietitians work together to make sure the plan of care that is developed reduces the amount of work the couple must do and increases their capacity to do it.
When specialty consults are necessary, the team reaches out to the relevant specialist and then brings the recommendations back to the larger group to ensure they are inline with the larger plan.
The team utilizes a dashboard to allow for an accurate understanding of the John and Susan’s work and capacity levels.
In the traditional medical model, John’s capacity continues to decline as his conditions are not well managed. Additionally his work has not been reduce and has in fact increase now that Susan is struggling with problems of her own.
The traditional medical model has placed John and Susan in a seemingly never ending loop that continues to add work to their lives while providing no additional capacity. John will struggle to improve over time and will likely continue to have expensive hospitalizations.
In the Minimally Disruptive care model John and Susan’s work and capacity balance is carefully monitored by their care team.
The care team develops care plans that help the couple