I feel awash with stories (nightmares even) of disastrous, frustrating relationships between people and their professional care teams. I listen with amazement and watch the hurt, the anger, the self-blame, bubble out, spew forth. Sometimes I have to sit sideways to protect my heart from breaking. At their best, relationships are partnerships. Partnerships can be a bitch in the best of circumstances. Yet, good partnerships make me high – the partnerships with my honey, my work teams, in music groups, with the anonymous one-time chance encounter and yes, with my health teams. Continue reading “Need a recharge? Listen for what works.”
As a person with MS, I’ve written that my personal health goals are to progress as slowly as possible and do nothing that will mess with my pathological optimism. People I talk with about personal health goals say it’s not easy to come up with personal goals. What do I mean? OK, people who are well want to stay well. Those who are acutely ill (cold, broken leg, stomach ache, etc.) want to get over it. Those who have chronic conditions want to manage as best as possible. Here’s a stab at a list of personal health goals. Continue reading “Personal Health Goals”
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. Continue reading “Health Hats – 2016 in Review”
I’m committed to and invested in evidence-based health and wellness. I get my flu shots, exercise every day, and take my cholesterol meds. I check out studies so I’m informed when I make decisions with my neurologist. I am committed to patient-centered research. This week I was intrigued by a conversation in Washington @PCORI (Patient Center Outcomes Research Institute) about the challenge of following up with people using medications in off-label ways (no formal evidence, many experiments of one). The thing about evidence is how does evidence happen when there is patient and/or clinician creativity? People try something, it helps. They share on @PatientsLikeMe,@mypatientsMatch or social media. Someone else tries it. It helps some and not others. How does that experience turn into evidence? A challenge is that such data is either not collected or so spread out that it can’t become evidence. Plus, it’s tough to collect data about how stuff works. How can studies be done about people after they feel better? Continue reading “What Works? Outside the Box”
I was discharged after bypass surgery with 26 pages of instructions. I was just concerned about getting home.
My dad lives alone on the other coast. He takes 11 medications from 4 different providers. At least one gives him a blood thinner. What do I do if he bleeds?
I can get my acupuncturist and massage therapist to talk to each other, but not my doctor. They’re all helping me with my neuropathy pain.
My doctor tells me that if I get this surgery I’ll have a 10% chance of living longer and 1% chance of serious complications. What does that mean for me?
The doctor told my mom that she can’t drive anymore. How will she get her groceries, her meds, to her doctor appointments?
Who will feed my cat if I have to go to the hospital?
I live 4 miles up a dirt road. Will I be able to stay in my house?
It’s complicated to manage health and wellness. Planning and living care is daunting. The journey occurs inside and outside of the medical space. Sometimes we travel alone and sometimes with our care partners and health team. Always within our communities. The journey is our life – one foot in front of the other, with expected and unexpected, desired and undesired forks in the road. We can wing it or look for a map. We have evidence of what works – sort of and sometimes. The evidence is about specific routes for groups of people. You and I may be on an unusual route. You and I are not groups of people, we are one person in many groups. Once a person decides or needs to feel better, a roadmap helps. A roadmap plus stopping periodically to check if you’re still heading to your destination. Continue reading “An Experiment of One”
People: What’s wrong with me? Should I tell the doctor? What does she want me to do? Can I afford it? Does it (will it) hurt? Can I (will I) still take care of my family (go to work, go out, have fun)? What happens next? How’m I doing now? Did it work? Did it help? What should I worry about? What should I do if it happens (again)?
Clinician: What’s on his mind? What’s wrong with him? What should I do next? Did it work? What do the tests tell me? What should he do next? Did he do it? Will he let me know? What is anyone else doing about it?
Questions, questions, questions. So many bumps in the road and detours in the health journey. Few maps, spotty GPS at best.
Essentially, the medical part of the health journey is 1. Finding out what’s going on (diagnose). 2. Plan care (What needs to happen, by whom, when? What do we expect to happen (outcome)? What could go wrong, how can we prevent it, and how will we deal with it if it happens?. 3. See if the plan worked. 4. If it didn’t, adjust, try something else.
We are each an experiment of one.
These days I’m fascinated by the planning care part. Neither the patient nor the clinician can plan care alone. They need each other and much support – family members, other professionals, technology, and most of all – communication.
Eventually, everyone plans care – usually over and over. Our health system doesn’t seem geared toward planning care. Ten minute infrequent visits between patient and clinician. Routines and technology that can’t handle the dynamic, constantly changing information flow of planning care. The information certainly isn’t easily available to everyone on the team when they need it. Few, if any, rules (standards) exist for patients putting information in.
People: When you speak with a clinician, agree upon a plan of care. Set up a way to ask questions as they come up and report on status, be it portal, email, phone, or keeping a journal.
Clinicians: Use the words plan of care. Write the plan down. Let your patients know how to communicate status and ask questions as they come up before the next visit.
Everyone: Expect your electronic health records to be able to record and track care planning.
When I was diagnosed with MS, people came out of the woodwork with advice and feedback. I was so not receptive. When I talked with my neurologist about the advice, he said, everything works for someone. The challenge is figuring out if it works for you. I have an executive coach who gives me feedback periodically. This I listen to and follow to the best of my ability. My wife gives me feedback. After 41 years of marriage I know she’s right 95% of the time. I follow it 80% of the time. A family member asks me for advice and I’m reluctant to give it. Who am I to advise? What if it’s bad advice? Giving and taking advice or feedback seems so complex, fraught, welcome, and unwelcome.
What’s the difference between advice and feedback? According to the dictionary,
Advice is guidance or recommendations concerning future action, typically by someone regarded as knowledgeable or authoritative.
Feedback is information about reactions to a product, person’s performance of a task, etc., used as a basis of improvement.
They blend together for me.
Speaking with two teachers, math and art, we came up with empathy, modeling, and faith as the keys to giving great feedback and advice. Empathy. Listening to understand the person’s story, feelings, and perceptions. Modeling. Walk the talk. Faith. Confidence that the person is already great and can act on the feedback or advice you’re giving if it’s right for them.
So what about key factors for receiving feedback and advise? How about trust, readiness, and self-confidence? Trust. The adviser, feedbacker(?) is knowledgeable and has no other agenda than your growth or recovery. Readiness. I’m open. I want feedback. Self-confidence. I can do as suggested. Continue reading “The Thorny Thicket of Feedback and Advice”
Consider the fabric of best health. The Quadruple Aim (Best patient and clinician experience, best population health, reduced cost) is that fabric. The weave of that fabric is information about our personal and collective health and health journeys. The warp is learning and continual improvement.
Quadruple Aim: Improving the patient experience of care, improving the health of populations, reducing the per capita cost of health care, and improving the work life of clinicians and staff.
Health information includes the data in our health records (paper or electronic), patient generated health data (PGHD) (vital signs, activity, experiences, symptoms, history, etc.), census and community data, and perceptions collected from surveys, focus groups, and chatter. Learning can be formal and structured as in research and analysis, clinician consultation and advice, education and training, and tests of change as in Plan, Do, Study, Act (PDSA) or informal as in social and traditional media, child rearing, personal experiments (try something, see how it works, try something else), family, neighborhood, and water-cooler conversations. Continue reading “Harmonic Convergence”
I attended the American Academy of Communication in Healthcare Conference in New Haven. The AACH is the professional home for all committed to improving communication and relationships in healthcare. About 200 people attended from US, Canada, Israel, Brazil, Belgium, Australia. Although most attendees were physicians, I met nurses, therapists, coaches, office managers, patients, sociologists, medical students, and researchers. A couple of very low-key sponsors but no vendors present. A pleasant relief. The conference was designed to maximize interaction, learn from each other, and build skills within work groups and special interest groups. Met several venerable experts. Very open and quite humble: We have a lot to learn. Especially about patient centeredness. Most exciting for me was a presentation by Sharon Schindler Rising, a nurse midwife, talking about Centering Groups – facilitated groups of 6-10 young moms/couples preparing for the impending birth of a child. A wonderful example of people-centered design with participants directing much of the flow of the monthly small groups. Professionals and services came to them. Groups often kept meeting on their own after the children reach one year old, sometimes for 8-10 years. New groups have been starting for decades. Evidence over that time showed significant increase in proportion of pregnancies going to full term and decrease in the proportion of low birth weight babies. One sad piece of the presentation was the description of the barrier caused by the advent of the electronic health record. One participant-generated practice had been for moms and dads to enter their own health data into the paper record: instant empowerment! Not so with electronic record. People could no longer enter their own data into the health record. Shadow records had to be created. Lord, I was crushed when I heard this. I participated in several subsequent discussions about the infrastructure and skill set that would be needed to spread the Centering Group model to other settings. Instant learning!! Continue reading “AACH: Communication and Relationships”
Still exploring communication across transitions. This week speaking with clinicians. First, with case managers in an acute, short-term rehabilitation center serving people with recent strokes, heart conditions, or surgeries needing less than a month of intensive therapy. The transition points between nurses shift to shift, between physicians and between case managers, between patients, families, and primary care clinicians at discharge worked the best because they’re well documented and standardized. Tools are in place for the sharing of information. Either the hand-offs between clinicians are routine or patient education notebooks are completed the same for every patient: not the same contents but the same workflow. Since it’s not acute care (short stays) there is more for hand-offs and to develop relationships with the patient and their caring network and time for patients and families to absorb the instructions. A considerable volume of paper is generated, resulting in lots to read and lots to fax (everything by fax!). Maybe too much to read. Information coming in with patients was less complete than information going out with patients. Communication was better in general and more complete if a person received all their care within the same health system. The biggest risk? Not receiving information about critical medications, such as blood thinners, steroids, and antidepressants.
Next, a community Primary Care clinic. Again, communication best when a person is discharged from a hospital within the same health system as their clinic. Then a nurse knows when someone is going to be discharged or has been discharged. The nurse calls the patient at home and can let the doctor know that the patient has their prescriptions filled, knows what to do, or if anything needs attention. For the patient discharged from a hospital outside the health system, the clinic often doesn’t know the patient was even in the hospital and has to scramble to gather information so they can support the person. The transition from home to office works least well. Someone calls the office needing an appointment or has a question or needs a prescription filled. The quality of screening, triage, and information gathering varies widely The more the patient or caregiver takes charge, the better the communication with the call center the better the clinic visit goes. Transition communication with specialists outside the system seemed quite a challenge without a common EHR for communication. Continue reading “Transitions – What you don’t know can hurt you”