Care Redesign
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What Happens When We Can’t Cope — Part 2

Interview · February 8, 2017

Victor Montori, Frances Mair, and Carl May discuss: Do we give patients more work, more choice, or both?

Victor Montori and Charles May and Frances Mair

Part 2 of an interview with Carl May of the University of Southampton and Frances Mair of the University of Glasgow on minimally disruptive medicine, conducted by the Mayo Clinic’s Victor Montori on behalf of NEJM Catalyst. Listen to Part 1.


Victor Montori: Most of the models that I’m familiar with for managing patients with multiple chronic conditions — I’m thinking of models in geriatrics or models of palliative care — seem to focus on the manifestations of disease, but are very silent about the work of being a patient. Here I’m hearing you say that there is work, that the work is shouldered by patients and often by their extended social networks. How should the health care systems redesign their processes? How should they rethink the way they do their job, recognizing that there is work to be done and some of that work appears to be transferred — I’m using a nice word, dumped may be another word — onto the shoulders of the sick? What are the changes that perhaps are necessary for the system to be mindful of these medical errands, of this accumulated work of being a patient? How can they work to make sure that this work itself does not become a source of illness?

Frances Mair: I guess there are a number of things that need to be done. I think on the one hand is being aware that this is an issue, and looking at the way that we remunerate or reward health care professionals, that it’s not just about doing procedures but about providing holistic care.

In our research group, one member of our team recently had a pilot trial where it was called the care-plus study. They were looking at just giving patients with multi-morbidity longer appointments with their family practitioner. Rather than having the usual short appointment, extended appointments over a period of time. That clinical trial, which [was] short-term in a small sample, certainly has shown real benefits in terms of quality of life but also some signs of financial savings. So thinking more about holistic care in that sense.

Then I think the other thing is about giving much more attention to the preferences of patients. A lot of times what we do in health care is [focusing on making sure] the benefits and risks are finely balanced and tuned. I don’t think we give enough attention to patient preferences, and getting them to prioritize what they think are the things that might be achievable or might be doable for them, or checking with them that what we’re suggesting as a management plan is something practical and feasible that they will be able to do going forward.

Montori: It sounds like you want to give patients more work. They now have to participate in making decisions.

Mair: Well, they have more choice and I think in the longer term that gives them a choice about whether they’re going to be able to take and whether they wish to take on more work or not.

Carl May: I think Frances is right, but underneath all of this there is a real problem, which is that neither health care systems nor patients or caregivers often acknowledge this as work.

Health care systems, which I think are ubiquitously populated by people who want to do good, and for patient groups who by and large are populated by people who if they’re not going to get better at least don’t want to get worse, tend to see what’s going on here as a gift rather than as work. So to get health care systems to acknowledge what they’re doing as generating and distributing work would be the first step to get them to think about how to relieve some of those burdens. We have an interesting conundrum in the 21st century, which is that we don’t just have burdens of symptoms and burdens of care. We actually also distribute burdens of treatment. Getting health care providers and health care systems to acknowledge that is an interesting problem.

Montori: It’s interesting that a number of the recent modifications in the way health care is delivered in the United States, like the patient-centered medical homes or the affordable care organizations, have not really looked at the extent to which change is made in the way care is delivered (although most of those changes are really about how care is paid for what care is paid for), [or] at the impact that those modifications have had on the work of being a patient. That seems like an opportunity or a blind spot that we might want to look into to make sure that we don’t have unintended consequences in that space, particularly for those most vulnerable, as you were saying before.

Technology is often brought up as a solution to almost everything these days. Everybody is trying to come up with the next Uber for health care and other things of that nature. What technologies have you seen that you think might be helpful in reducing the work of being a patient? For instance, telemedicine comes to mind as something that may reduce the need to travel and find parking, and all sorts of things associated with going to the medical center and spending hours in waiting rooms and so forth. Can you describe a bit about what you think might be in the near future in relation to technological solutions to the problems of too much work for patients?

Mair: I can give you an example here in Scotland, where we’re piloting a system where patients can self-monitor their blood pressure and then the reading goes directly to their general practitioner or their family practice doctor. If the readings are normal, then they don’t need to attend for a checkup appointment, but if they’re abnormal they get called in. It prevents them having to attend the practice for a visit or more regular visits because they’re actually able to just send a reading from home. That cuts down the number of visits that they have to make and also gets them in when needed. Fortunately, that’s also been embraced by the family practice docs who are saying that they get to focus on the people who have an issue with their blood pressure control rather than seeing people whose blood pressure is well-controlled, which may not be such a good use of their time. I think that’s an example.

Montori: That brings up another issue that is sort of the mirror image of the work of being a patient, and that is the work of being a clinician in the context of an increasing level of complexity, both of the systems of work in which we do our jobs, and the complexity of the patients’ lives in which we’re trying to influence a trajectory of disease. It seems to me that if patients are going to start transmitting all sorts of stuff from wearable devices and all those things to the general practice, there’s going to be a whole lot more work in the general practice that will then accumulate, and then we’ll have to be talking about the burden of caring as a clinician. Is that not an issue?

Mair: It can be an issue, and I think one of the things that’s absolutely necessary is that these new technologies need to be able to be integrated into the everyday workflow of clinicians. That needs to be done in a seamless way. So this blood pressure system actually gives the results in through the same portal that the doctors access blood test results from and everything else. It goes through their normal workflow and they either tick it as being normal or abnormal and needs action — you could have a standardized action. Actually, it works quite well, but you’re quite right, technology can add work and that has to be considered. But already at this present time, the change in the complexity of patient care means that everybody is experiencing more work. In over 20 years as a general practitioner, people come in now not just with cystitis or a urinary tract infection, [but] they often have that in the background of renal failure and heart failure, and they’re on Warfarin or they’re on other drugs where there are all sorts of problems about any treatment that you give them, which is not as straightforward as it used to be.

I think treatment burden is something, and care burden as well from the health professional point of view is a challenge, too. We do need to take that into account as well.

There’s a real issue about that. The other thing that we haven’t talked about on either side is the capacity to deal with a given treatment burden, because we know that some patients and their caregivers are more able to deal with certain levels of treatment burden than others. That’s a variety of reasons. We have given, again, little attention to what those factors are and how we should assess them or evaluate them to see who’s at risk of being overwhelmed by a given treatment burden.

Montori: Carl, when we think about this issue of the capacity that patients and caregivers have to take on the work of being a patient, often the list of things that comes to mind recalls the lists that people are looking at, at the more macro level identified as social determinants of health, as they translate into giving more or less capability of people for being and doing in life. This idea of focusing and balance on how much work and how much capacity people have to get better and of having health care systems being mindful of that — what we have all been describing as minimally disruptive medicine — as we come toward the end of our conversation, Carl, do you want to say something about minimally disruptive medicine and how might it shape health care in the near future?

May: What we mean by minimally disruptive medicine is precisely paying attention to how people live and experience their illnesses and their preferences, and thinking about what health care providers and health care systems ask of them. So we need to focus carefully on the demands that systems make. We can do that in a number of ways. A really simple example of this is here in Southampton, we have a minimally disruptive palliative radiotherapy service. We’ve eliminated a whole pile of pre-assessment consults of psychological tests and so forth. We have created a one-stop shop for palliative radiotherapy. That’s been incredibly successful for people who are very sick and who aren’t really able at that stage in their lives to carry big burdens that are derived from the health care systems. That involved thinking really carefully about what people have to do to get care at that stage in their lives, usually very close to the end of their lives, and the demands that that makes on their social networks and families.

It’s important to remember that some people don’t have social networks. They don’t have families. Some people are very isolated, and we need to attend to that in a way that minimizes the treatment but that also attends to the possibilities of improving the quality of what people get when they encounter a health care system. The really powerful argument for minimally disruptive medicine is that it’s got to be cheaper. It’s got to be a cheaper way of giving care than maximally disruptive medicine. It’s got to be better focused. That must be the outcome of applying these kinds of ideas. They really ought to be reducing the cost of health care to both the provider and the recipient. That’s a big issue I know in the United States. It’s a growing issue in Europe.

Montori: It’s particularly pertinent because the cost of consuming health care or getting the health care that one needs is often absent from most economic evaluations. It’s a hidden cost that families and societies pick up. Because they don’t make it to the balance sheet, they are ignored and work is often transferred with impunity to patients and families. It sounds like the model that you just described has applied these ideas of lean production but not only hasn’t stopped at the production of the service, but actually has looked at reducing the waste for the consumer of the service, for the patient and family — almost a form of lean consumption, which I think has been underutilized in health care.

Frances, what’s the future of minimally disruptive medicine from your perspective?

Mair: I think the future is about putting the patient at the center and realizing that a one-size-fits-all approach won’t work, and that we need to be much less focused on clinical guidelines that act as if we have a homogenous population, which is not the case.

Montori: Excellent. I think minimally disruptive medicine should be a part of the recipe of solutions for the future of health care if we want health care that is focused on persons. Carl, Frances, thank you very much for speaking with us today at NEJM Catalyst. Thank you again.

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