What Patients Want

It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has.
William Osler

Recently, in the New England Journal of Medicine (NEJM), there were two articles that gave different points of view on how to reform health care in order to decrease costs in the wake of the continuing discussion about the Affordable Care Act (ACA).  The two articles both had identical short introductions by the editors of the journal that read, in part, “There is wide agreement that we must find ways to bend the health care cost curve.  Taking different approaches, the two articles that follow present a range of options, including reducing both the prices and quantity of services for public and private payers, reducing administrative costs, implementing new market based incentives and reforming the tax subsidy for employer sponsored heat insurance.”

I was struck as I read both articles and reviewed the ideas that both contained that they shared a common focus.  Both articles looked at patients and their families as consumers and focused on the financial incentives and the financial barriers to receiving quality health care and both framed the discussion strictly in terms of cost, legislation, and administration.  Both addressed patients as consumers, rather than as people who are frightened, depressed, and concerned about their own frailty and the effects of their disease on others around them.   In both defense and deference to the authors, (and they hardly need my defense), they are all people who care deeply about patients in a holistic way and were specifically commenting on aspects of health policy and not on patient care.   

However, I do believe that when addressing health policy, you have to think about individual people in need or the policies developed can easily have unintended negative consequences for those who are faced with using the health care system in all of its glory, cost and confusion.  Tom Lee understands that as evidenced in an article in that same journal published one month earlier.  His article entitled “Care Redesign– A Path Forward for Providers” did not focus on the national issues of decreasing cost and instead focused on how people obtain care.  Early in the paper he states, “…healthcare is intended to help people, not just provide a commodity as inexpensively as possible”.    Now this was something I could relate to!

Much of Lee’s article gives a primer on asking patients what is important to them, which is unfortunately quite a radical principle.   We at Accolade founded our company upon this simple philosophy of listening to the patient and addressing their concerns first.  Lee’s stated goal in care redesign is, “to improve the value of care as defined according to the patients’ perspectives”.  In order to do this he states “we must understand the outcomes that matter to patients and families and what it costs to achieve them”. 

Most physicians and health care organizations believe that they know what people want and it appears obvious – they want to get better and they want to spend as little money as possible doing so.  However that misses the point that as you delve into detailed discussions with people you often find out that what they want as an outcome actually deviates in the details from the physicians’ assumptions.  For example, in Tom Lee’s article he described a study of stroke patients.  He states, “From interviews with patients, we learned that many of them are interested less in readmission rates than in the number of days spent at home during the first 90 days after a stroke.”  The Stroke team that did these interviews, also came to understand that “we know how to measure readmission rates but not yet how to measure what matters more to our patients” and also came to understand “we don’t reliably capture information regarding other outcomes, such as continence and mobility, that are important to patients who have had a stroke”. 

More than five years ago, when we were just starting to design Accolade, we understood that to be successful in helping people and lowering costs, we had to understand what people across the health care spectrum wanted as outcomes, including those who were healthy and those trying to stay healthy, those who were acutely ill, those with chronic illness and those with catastrophic, life threatening illness.  We talked to them and to this day our model of caring continues to depend on talking to individuals continuously to find out what they want and what outcome is important to them.  One of our lessons is that as illness progresses and enters new stages of recovery or chronicity people’s desired outcomes change as well.  Asking people at one point in time is important but even more important is having a relationship with them that allows for that constant discussion as people’s priorities change. 

Lee states in the article that “An emerging insight is that our overall organization has to function more like our most beloved clinicians – showing patients that we care by asking them how they are doing and by responding accordingly, even when were not fact to face with them.”   It is important we follow Lee and Osler’s wisdom, understanding every “sort of person” who has a disease and always “asking them how they are doing and responding accordingly”.