Jessie Gruman is president and founder of the Center for Advancing Health (CFAH), a nonprofit, Washington-based policy organization which, since 1992, has been supported by foundations and individuals. CFAH works to support people’s engagement in their health and health care. Prior to founding CFAH, Gruman worked on these concerns in the private sector (AT&T), the public sector (National Cancer Institute) and the voluntary health sector (the national office of the American Cancer Society). DW talked with Gruman recently about her work and her perspectives on her role as a patient, health care reformer, and the recipient of caregiving.
How did you get involved in health care?
By way of education, I am a social psychologist. I have worked in a variety of different settings on issues of health behavior and patient engagement and for the last 23 years as the President for the Center for Advancing Health. What propelled me into this work were my own experiences. When I was 20, I was treated for a serious case of Hodgkin’s disease. From this experience I learned how truly difficult it is to really benefit from one’s health care. The things that I needed to do to stay alive, like follow complicated chemotherapy and radiation instructions, were difficult. This led me to study how people address their health and health care needs in order to understand why we don’t always act effectively on our own behalf.
Until about seven years ago, I didn’t speak from a patient’s perspective, nor did the Center for Advancing Health. But then I received my third primary cancer diagnosis and was particularly struck with what seemed to me to be ever-growing responsibilities for making health care work: what does it take to find good care and make the most of it? This experience led me to write After Shock: What To Do When Your Doctor Gives You – or Someone you Love – A Devastating Diagnosis and to shift the focus for the Center for Advancing Health to the patient experience from the patient perspective.
When I looked at existing books about getting through the first few weeks following a bad diagnosis, I found that people writing as patients were most often doing so either as victims (I received such poor care!) or heroes (Wear fancy shoes to chemotherapy sessions!). While both can be inspiring, it was my impression that most of us start out as neither. We just do the best we can to find someone we trust to care for us well. I thought there was room for a voice to talk realistically about the tasks you have to do during those first very stressful days after getting bad health news.
I interviewed over 200 people about how they responded to difficult diagnoses and I learned so much from them! As a result, we also shifted the perspective of the Center for Advancing Health. Now, based on studies, interviews, focus groups and surveys, we speak on behalf of patients, representing a realistic perspective of what it feels like to be unwell and to be faced with the tasks of caring for yourself.
How do you define “good care”?
Good care is the right care for me. For each of us, that means finding someone whose expertise and experience we trust, who will share that expertise with us and who we think will listen to us and try to understand our preferences for treatent. From a policy perspective and practice, it means making it possible for us to easily find the information and advice we need to take on all the responsibilities of caring for ourselves (or our loved ones). This is no easy order: We patients are diverse and our needs vary widely.
We spend a lot of energy at CFAH raising the visibility of the barriers we face in making good health care decisions. For example, there is a movement to encourage patients to choose a health care facility based on quality rankings. But the reality is that we often go to the facility our clinician recommends or where she practices. Further, the ranking data is not always publicized or easily available, especially for those with limited Internet access, and the data that are available are often not relevant to the individual’s concern. The expectation that, under such circumstances, we are going to act like “consumers” and somehow meaningfully shape the health care marketplace is currently unrealistic. But what information do we need, and what will we use to ensure we can find high quality care? This is what CFAH is concerned about finding out from patients and communicating to decision makers.
Tell us about the CFAH tag-line: Evidence. Engagement. Equity.
Our original goal for the Center was to make sure that everyone has easy access to evidence-based information and care, whether the topic is medical testing and intervention, behavior change or health care quality. Making such evidence an integral part of health care delivery for us and our caregivers is essential as more and more responsibility for our care falls to us. Those additional responsibilities can lead to dangerous disparities in use of care among those who are sick, vulnerable and unable to act effectively on their own behalf. Supports must be in place for those of us who are too ill or who lack the resources and abilities to care for ourselves.
What are some of the challenges you face in coordinating your care?
Given the current state of primary care, the low level of interoperability of electronic health records and the unfortunate lack of communication among specialists and various health care institutions (labs, testing sites), it is up to me and my caregiver husband to make sure that my care is coordinated. For example, at one point, I had nine active doctors that I would see in a year, and I was the sole arbiter of which of them got what information about me.
There are initiatives now being implemented that may really help with care coordination, like the patient-centered medical home. And while the concepts are strong, the reality is that my primary care physician does not have the staff, time, or resources to connect with all of my different clinicians, and so it’s my responsibility at the end of the day to make sure that the right information goes to the right place at the right time.
What do caregivers need to be aware of when taking care of a patient? What does the patient need to be aware of regarding the point of view of the caregiver?
Having just received my fifth primary cancer diagnosis, I have gone in and out of being cared for by others. Much attention has been paid to getting the practical tasks of caregiving done, but there is more. Being ill is rarely a stable social and emotional experience. Many of us go back and forth between feeling OK and not OK. We sometimes feel like we can do what we need to and sometimes are really discouraged. We hope our caregivers and clinicians will be elastic and responsive to this ebb and flow. But when you are aren’t feeling great, it can be hard to be patient when clinicians and caregivers do not meet you where you are.
It’s important to remember that caregiving is not just a set of mechanical tasks. We are at the whim of our symptoms and medications. Most patients would give anything to be well enough not to need a caregiver. Having to have a caregiver often means not being independent. This takes away our autonomy and sense of self, our sense of control. In order to actually function physically we need someone else there. Good caregivers have the imagination and flexibility to support us to do what we can to care for ourselves and to help us when our energy and abilities fall short.
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