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One Small Step for Patient-Centered Care, One Less Barrier to Engagement


As far as my chemo nurse Olga* is concerned, I can do nothing right.

She scolded me for sending an e-mail when she thought I should have called and vice versa. She scolded me for going home before my next appointment was scheduled. She scolded me for asking to speak to her personally instead of whichever nurse was available. She scolded me for calling my oncologist directly. She scolded me for asking whether my clinical information and questions are shared between my oncologist and the staff of the chemo suite. I could go on.

Funny, I think to myself. If she had told me the basic ground rules of interacting with her and her colleagues, I would have been happy to follow them. Otherwise, how am I supposed to know guess?

While my recent diagnosis of stomach cancer last fall introduced me to many new doctors and their practices, most were one-shot consultations. Other than making sure the test results they ordered and their recommendations found their way to the right physicians (my responsibility in the absence of an interoperable health record), it didn't really matter how I communicated with them over time.

But when you start chemotherapy or have a heart attack, brain injury, stroke or a serious chronic condition, you sign on to a long-term relationship with a whole crew of people receptionists, various types of nurses, aides, physical therapists, educators, coaches, phlebotomists, pharmacists and doctors -- that is likely to require a lot of back-and-forth. Chances are that these professionals have figured out ways to work together pretty efficiently. The problem is that most of them don't let us in on the action; they rarely provide us with (ahem) 'rules of engagement' that would tell us how to work most effectively with them.

And so we are left to guess and when we guess wrong, sometimes being scolded. This, of course, leaves us frustrated'sometimes even mildly rebellious.

In interviews that the Center for Advancing Health (CFAH) conducted about receiving care after a serious diagnosis, again and again patients and families raised their bewilderment (and annoyance) about the difficulty of learning how to communicate with their specialists. And the same was heard from people discussing their regular providers. People can't figure out how to get their test results. They are puzzled about whom to call after hours or on weekends. They are baffled about whom they should talk to regarding billing and insurance problems. They are flummoxed by the new and unfamiliar demands placed on them by different sources of continuing care: rehabilitation hospitals, cardiac rehab, oncology suites, neurologists and other specialists and for some, unfamiliar primary care medical homes.

The confusion of patients and families will not in itself drive any widespread change in the way care is delivered. But our endless stream of identical questions to busy professionals surely interferes with their efficiency. And with increasing calls for the competent engagement of patients and families, making explicit the ways we can most effectively work with a team of professionals seems like a modest, feasible step for primary and specialty care providers to take. Doing so is one aspect of making our care truly patient- and family-centered that doesn't require a hi-tech solution or federal policy nudge.

So consider, then: a couple years ago, in response to interview findings, CFAH developed, with Susan Edgman-Levitan and her colleagues at Massachusetts General Hospital, a model guide for patients and caregivers that identified the basic information people need to interact over time with a given medical practice or setting.  The model includes items such as (1) the names of the care team members, (2) a description of who is responsible for responding to which concerns, for instance, questions about symptoms, appointments, insurance, and phone numbers, (3) how to get prescription refills, (4) procedures for after-hours and emergency care, (5) access to health records, (6) the process for reporting on tests, and even (7) information about parking and public transportation. Recently, a group of primary care practices decided they would pilot test this model.  Weeks later they abandoned the effort. Why?  Because the clinicians within the practices couldn't agree on their office hours.


(*Not her real name)

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman

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Comments on this post
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DrCarrieNelson says
February 2, 2011 at 7:51 AM

On behalf of my profession, I'm sorry, Jessie. For you to be scolded for not clairvoyantly knowing the rules of engagement is terribly common and terribly wrong. I feel my blood boil and my face redden when I hear stories like yours. In our efforts to improve the quality and safety of the healthcare system a mutually agreed upon set of communication expectations is essential. I think your Patient Guide is a great step in that direction! I will be passing it along to my colleagues. Here's some more from an article I tweeted not long ago:
Follow my blog at

Maryann Napoli says
February 2, 2011 at 12:50 PM

Dearest Jessie

This makes for extremely painful reading. The only bright side is knowing that you will take this awful experience and make changes that will help so many others.

With best wishes for better days ahead,

johngreiss says
February 3, 2011 at 1:14 PM

For the last 20+ years health care professionals, and partners in government, family leadership organizations, and service agencies have worked together to provide and promote family-centered, community-based, culturally competent coordinated systems of care for children with special health care needs and their families. This is not to say that care for children and youth with chronic health conditions and disabilities is perfect, and that parents are never scolded or confused. However, there is a broadly accepted goal among professionals and facilities that this should not happen. The quality of pediatric care is validated by those who graduate from pediatrics (when the age out at 21) and move to the adult system, and remark about how difficult it is to access care, compared to the pediatric system. I suggest that the adult system look to Pediatrics, and take advantage of the models and lessons learned about caring for children and youth with special health care needs. We don't have to start from scratch - and certainly do not have to reinvent the wheel - or flat tires...

Small indignities | HealthBeat says
February 7, 2011 at 2:18 PM

[...] of the Center for Advancing Health, is undergoing treatment for stomach cancer and recently blogged about the challenges of trying to follow the rules: As far as my chemo nurse Olga is concerned, I [...]

Financial Concerns Are Not The Primary Barrier To Health Care In America - Better Health says
August 31, 2011 at 8:02 AM

[...] simple guidelines â?? or explaining the basic ground rules of engagement as Jessie Gruman calls them â?? can help patients and clinicians overcome some of these barriers.  A straight-forward, [...]