“I don’t want to be a pessimist: the work you have done is important and it IS helping. It’s just so slow.”
This sentence was part of an email I received recently from another patient safety advocate and it expresses a sentiment that I face on a regular basis. I have listened to others say the same thing for years – “What you do is great, but…” Comments like this usually make me pull back and question my efforts. This time I decided to “lean in” and remain committed to work that I know from first-hand experience is valuable. I now refuse to minimize what I do and in fact, I consider it to be the foundation of real health care reform.
I direct the daily activities of The Empowered Patient Coalition, a 501(c) 3 organization that provides an unprecedented level of information, resources and support to the public. The Coalition is committed to promoting a culture of meaningful interaction and active participation that allows patients and their advocates to assume a greater role in improving the safety and the quality of their health care. I have yet to read a research study, journal article, or op-ed about improving patient engagement and safety that does not mention the pressing need to educate the public. But still, comments like the one above encourage frustration when what we need is a call to action.
Perhaps it is women’s natural roles as teachers, caregivers, and nurturers that give us the ability to recognize and appreciate the value in seemingly small gains. I recently read an excellent book entitled God’s Hotel by Dr. Victoria Sweet. She writes so beautifully about caring for patients at Laguna Honda Hospital, a San Francisco public safety net hospital that I can see from my back window. Laguna Honda may be the last almshouse in America – a place that cares for those with needs that aren’t easily solved by our current medical and social systems. Dr. Sweet and her patients benefit from what she calls “slow medicine” in which she takes the time to conduct thorough physical exams and use thoughtful observation and conversation to allow a patient’s condition to unveil itself.
I often work with one patient and one family at a time. I listen intently to their stories and I assure them that they do not have to face their life-altering health care experiences alone. In my “slow advocacy” I support patients and families as they find the solutions that work best for their unique situations and I help them reclaim their sense of security with educational resources that teach skills and build confidence. Often times, the most powerful resource I can offer is my heartfelt attention as patients come to the realization that being informed and engaged requires assistance from others.
I realize that this approach is in contrast to the seemingly lightning speed of health information technology and cutting edge advances in medical care delivery. I look at these technologies with awe and I imagine the effect they could have if coupled with a concerted, national patient education campaign. My fear is that we may overlook the vital step of laying a foundation of basic information and skills simply because it takes time and does not always address the challenges of patient engagement by using an app, a sensor, or an online patient portal. Both approaches must triumph if we are to be victorious in the momentous effort of improving our health care system.
My hope is that entities such as the Office of the National Coordinator for Health Information Technology (ONC), the U.S. Department of Health and Human Services (HHS), Centers for Medicare & Medicaid Services (CMS), the Institute for Healthcare Improvement (IHI), online patient communities, health IT companies, medical groups, and hospital systems, will recognize the value of slow advocacy and to support it by making the commitment to spend the time and effort needed to educate and engage the people they serve on a large scale. Imagine what we could accomplish if bedside advocates had the full support of those who influence national health policy.
Caring for, educating, and supporting patients and families takes time, but even small steps move us forward. Please don’t discount the benefits of slow advocacy and make the commitment to incorporate excellent education and engagement materials, resources, and training into all of your efforts on behalf of patients and families. My hope is that we move beyond the promise of patient engagement to the realization that our success depends on the connections that happen person by person, family by family.