Dragging or Walking?

In its simplest form communication is who, what and how.  Who needs to communicate? What do they need to communicate? How will they communicate? Our healthcare depends on communication between all members of the health team. That communication exists in relationships.  What do people at the center of care and professionals in healthcare look for in their relationships? Much as with any relationship – access when needed, exchange of information, listening, respect, speaking the same language, understanding each other’s values and priorities, follow through. Not easy in the best of circumstances. I’m amazed that we expect consistently good communication in healthcare. How can there be? Communication in health care is fascinating! Anyway….

I am a member of the Academy of Communication in Healthcare. I went to Baltimore this week to attend the International Conference on Communication in Healthcare and the Health Literacy Annual Research Conference. My attendance was sponsored by the Patient-Centered Outcomes Research Institute (PCORI) as part of their Ambassador program.

My goodness, an International Conference on Communication in Healthcare!! Still my beating heart.

As in most healthcare conferences these days the buzzword is Patient-centered. Buzzwords are weird. They make me suspicious. Patient-centered often feels to me like health professionals dragging the patient into the center with them (as in making sure we understand them and do what they want). Sometimes, however, patient-centered appears to mean empathy (walking in someone else’s shoes). So what is it? Dragging or walking?

• If it was walking we would talk about making choices about health and wellness rather than Shared Decision-Making. Patients have thousands of choices to make. Worse than putting in a new kitchen. What patient or caregiver thinks about shared decision-making? I’ve never heard that term used by a layperson. We think about the choices we have to make, constantly – about life, not just clinical treatment choices.  Can we afford it? Will I lose my job? Can I get there by public transportation? Do my cronies get it? Etc. etc. Several poster presentations at the conference included people with lived experience on the health team. They called them community health workers. People with lived experience who have expertise in communication can help us make choices. One presentation, Through Our Own Looking Glass: Teaching Families to Articulate How they Make Decisions discussed the shifting patterns and infinite variation in family decision-making. I can use this understanding of family dynamics. Caregivers can use this. I heard about primary care physicians having difficulty communicating with specialists? Doesn’t shared decision-making include docs sharing decision making with each other? Wouldn’t shared decision-making between clinicians help us all make better health choices?
• If it was walking we would be talking about life literacy or empathy as well as health literacy. A great poster was about the Effect of Early Pediatric Disability Exposure in Medical Education. Medical students paired with families of children with disabilities.  Again, lived experience increases empathy and understanding of determinants of health. Walking in others’ shoes. Another example: I heard a presenter talk about the percent of people who can read a bus schedule. Why aren’t we thinking about what percent of clinicians know how to get to their clinic by public transportation?
• If it was walking we would be researching caregivers as well as patients. Patients depend on caregivers, caregivers quickly become patients.
• If it was walking we would be asking so what to research – how can, how do patients, caregivers, and clinicians use research findings? How do we put research findings in media that people use day-to-day beyond pamphlets and handouts? Are media reports about research helpful or fake news? How can we tell? Does using the research findings work as the research suggests it might. Why aren’t we studying the outcomes of the choices we make? Do our choices get us where we want to go? Do they help us meet our health goals? Do they really solve or manage our clinical problems?

I hope to leave a conference with actions that might make a difference for me as a patient, caregiver, and advocate. This conference I came away with two:

Action #1: Four PCORI Ambassadors agreed to collaborate on writing for the lay public about specific actionable research using https://www.healthnewsreview.org/ as a resource. We could identify a set of criteria of worthiness to patients and caregivers such as

• Would catch my attention
• Clear and easy to understand
• I’d be likely to remember this material
• I’d be likely to discuss with others
• I’d be likely to use these health results in my own health journey
• I’d be likely to discuss with my healthcare providers
• The study includes people like me.

Action #2  About 25 people agreed to form a caregivers interest group within ACH.

All in all, a very good conference open to self-reflection and learning what works. Definitely worth my time.

I know that patient-centered is a continuum between walking and dragging. For example, hospitals will never come close to all walking. Hospitals are fundamentally designed to be clinician and diagnostic centered. Perhaps we could be more realistic and have a better sense of the difference between walking and dragging and lose the buzzword.

Here are some previous posts about communication

AACH: Communication and Relationships

Access to your health team – Asynchronous communication

Person-Centered #CarePlanning – What Data?