I care about what works for people on their health journey. How do lay people make choices for themselves in partnership with their clinician partners? So much affects our health choices, not just our medical decisions, but our behavior, our communities, the environment and the systems we use to survive and live well. I’m very interested in research, but I’m also a skeptic: How does this study help me? How does it help my family? How does it help my clinician partners? How does it help the people who support and care for us? We are the people at the center of care. Just because we found out that something might work in a lab, does that mean will it work for us? Read More
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? Read More
Let’s continue the conversation about making choices along our health journey. I call this choice-making informed decision-making. Some call it shared decision-making, others call it clinical decision-making. Common to all three labels is that decisions are made based upon evidence (research) when evidence is available. Remember that evidence says that under specific circumstances for certain groups of people (populations or communities) choice A is more likely than choice B to lead to a desired goal or outcome. For me (an individual) sometimes it doesn’t. And, in spite of $billions spent on research, most health decisions lack a supporting body of evidence – just too many decisions out there. As a patient and caregiver, I know that most of my health-related decisions aren’t clinical. They involve my behavior and my team’s behavior, the environment, my genetics, my social circumstances, the community I live in, and, of course, luck. Read More
It’s hard to reach personal health goals or solve medical problems without a plan. Plans require decisions. Never-ending decisions (choices) in the health journey. Clinicians, researchers, and insurance companies study and use Clinical Decision Support (CDS) to help with the decision-making process. It’s a shortcut for using research (evidence) in the decision-making. Some talk about patient-centered decision support (see a definition at the bottom of this post). They’re trying to figure out how to help people to make decisions in two minutes of ten-minute visits. Yet, few patients or caregivers I’ve met ever talk about CDS. So how can people understand the value and limitations of CDS? Read More
I’m the son, Custodian, and Healthcare Proxy of my 89-year-old mother, Alice. I live in a different state. My mother has diabetes and is depressed. Her care team, besides herself and me, includes medical providers in various health settings, community support agencies, and a full-time caregiver that helps her schedule and get to health-related services. My problem is to understand what my mother wants for herself and to track who says they’re doing something for her (including my mother and me), what they’re doing, and when they’re doing it. I want to know what it takes to do it (Can she afford it? Can she get there? Does it agree with her? Who will be with her? etc.). I want to know if the actions have the effects we thought they would. I want to know what her risks are and how we plan to prevent or respond to them. I want to able to keep track of all this and keep it current. I want to share it or have it shared from day-to-day and from setting to setting even if I’m not present. Read More
The Washington Post reported this week about a study done at the Mayo Clinic where 20% of patients seeking second opinions were completely misdiagnosed, 12% received a correct diagnosis, and the rest (67%) got partially correct diagnoses. Read More
Have you ever remodeled your kitchen? So many decisions: Cabinet style, drawers, finish, hardware, not to mention the floor and appliances. There’s you, your partner, a contractor, a cabinet person, a floor person, the appliance merchant. Decision after decision – should we or shouldn’t we? And nobody’s gonna die or get injured – hopefully. All while trying to keep living, cooking, dishes, lunches. My wife and I were so stressed. Kitchen decisions pale next to health decisions, especially medical decisions. It’s not like, “do I prefer this drawer pull to that drawer pull?” “Would I rather have wood or tile floors?” There is so much more uncertainty in health care.
Why me, why now? Who says? How sure are they? What if I do? What if I don’t? Will I still be able to ….? Who pays? What will they think? How do I get there? What aren’t they telling me? Are they listening to me when I say I can’t or I won’t? I just can’t think right now! Oh, this sure sucks! Read More
From my memorable quotes pile:
Harried caregiver: What are we supposed to do next? Instructions from doctors, just getting through the day, plus dealing with bureaucracy? My word, I’m so overwhelmed. Everybody thinks their thing is the most important. Can’t this be easier for my wife and me?
Recently diagnosed patient: I feel like crap. I want to follow instructions, I do. I thought I understood everything at the office. Now I’m home, how do I get my questions answered? Read More
I’ve been feeling my oats in 2016 as an advocate and catalyst for Empowering people as they travel together toward best health. As my dear friend, Mary Sue said, Danny, you’ve found your calling! Wearing my many hats, I often feel like I know enough to be dangerous about much of healthcare. When I walk into a room of experts in their fields – clinicians, researchers, policy makers, techies, insurers, executives, I think, What am I doing here? I’m way over my head. It takes two minutes to understand that I’m the connector of their considerable expertise to the workflow and life flow of patients, clinicians, caregivers, and staff. I’m also the translator among their jargons. I can shift the conversation by offering a voice for some experiences of patients, caregivers, and clinicians.
I’ve refined my work this year as a connector, translator, and advisor while working as a technical expert in patient-centered research, behavioral health information technology, community health, and health payment innovation. I’ve benefited from the warm embrace of Wellesley Partners during this transition year after leaving my 40+ years as an employee and boss. I am grateful that they believed in me and helped me polish a few rough edges of inexperience. I also appreciate the counsel of many – Doug, Geri, Pat(s), Juhan, Bevin, Eve, Jarred, Keren, Jonathan, Sarah, and Lauren to name a few. You all know who you are. Thanks. I’m grateful for the many inspiring people in the patient/caregiver/clinician experience space. Thanks for all you do. You keep my embers glowing. Read More
When diagnosed with multiple sclerosis, I did little research. Here I was, a card carrying member of the research industrial complex heavily involved with the Patient-Centered Outcomes Research Institute (PCORI). I just couldn’t bring myself to Google MS. I relied on my wife to do the research and inform me. I told my neurologist I wanted to get worse as slowly as possible and didn’t want to take anything that messed with my pathological optimism. Then I relied on him to make medical decisions for me. No clinical decision aids. Simultaneously, friends sent me books and links about diet, lifestyle, over-the-counter supplements to help me with my MS. Thanks, I guess. Not that receptive. Without looking up one study, I tried non-medical professionals – massage, chiropractic, and acupuncture. These I still use almost a decade later. I brought whatever I heard about or tried to my neurologist, and we discussed it. He told me that he knew about drugs and medical therapeutics, but that everything worked for someone. Some things he knew about and some he didn’t. He liked hearing what worked for me. He told me what he had heard from other patients.
When my mom was diagnosed with Pancreatic cancer, she relied on me to do the research. Well, really, she asked me questions, so I had to do the research. In fact, she didn’t make any decisions based on the evidence I uncovered. “I’ve had a good life. No surgery, no chemo, no radiation. I want to stay home.” Read More