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. Continue reading “Precision Prism”
The pervasive drumbeat of Calls for Action in healthcare overwhelms me, excite me, bewilder me. I’m wired for action. I have to listen and consider or shut it out. I have no middle ground. There’s a limited amount of gas in my tank. I feel protective of my retirement dollars. And I still need to take out the garbage and do the laundry. Do I want to respond? Am I able to respond? What am I really responding to? How much is enough? Does it align with my mission? Will it be fun? Continue reading “Resist, Fund Me, Change, Join, Decide, Click, Lead”
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 a technology nerd and early adopter while also a profound technology skeptic. My heart sings when communities of people solve problems that matter to them and theirs and then look for technology partners to automate and share their solutions. By community, I mean partnerships of people at the center of care (people, care partners, clinicians) and neighborhoods, counties and states.
Recently, I spent a few days with big data, technology, entrepreneurs, and healthcare under the big top of Health 2.0 in Palo Alto. CA – a relatively low-key festival of mostly entrepreneurs trying to sell big data and apps with the edge of worry about engaging patients in their data and products. I felt at home with my advocacy and community browsing new ideas and new uses for technology Continue reading “Community/Technology Partnerships @ Health 2.0”
This week people told me stories about a moment in their health journey – Symptoms, people, relationships, procedures, thresholds, feelings. Completely fascinating, inspiring, and gut wrenching windows into life’s challenges and tragedies. I heard, I’m worried, the surgery worked, I can’t find a clinician who listens to me, my condition recurred – worse, my family’s supportive and grieving, how will I manage my job, I fell, my mother went into assisted living (all from different people). Other people told me about work they’re doing – research, businesses, experiments. I heard, let me tell you about the study I’ve been doing about multiple sclerosis, I’ve learned a lot about the stages that a person goes through as they gather information about chronic illness, I’m helping people succeed in their startup, I’ve found 5 people who have had the same success managing their chronic fatigue. I read studies this week about reducing opioid use, predicting resource use in chronic illness, and improving the ability of individuals and clinicians to communicate and set mutual health goals.
Actually, this is a normal week. Experiences, experiments, reflection, action. All tie together. Each necessary, none sufficient.
I taught this week at the Organization of Nurse Leaders’ Leadership Academy. My topic is Organizational Cultural – Change from Within. I love working with nurse leaders. Those who supervise the front line in healthcare have the most difficult job in healthcare be they nurses, therapists, doctors, support staff or other direct care workers. So much responsibility without commensurate authority or resources. Two issues stood out working with this week’s group: They often say, but it’s outside of my control. And they often feel alone. Continue reading “Alone, we can do so little. Together, we can do so much”
Notice how young kids learn to walk. Try, fail, try again, over and over until they get it right. On the other end of the continuum are politicians accusing each other of changing their minds. Dragging up statements from years ago to slap each other with a change in direction. When did they lose their ability to be proud of learning? When did voters start expecting politicians not to learn, recognize failure, and try something else? I don’t understand this. I once said I would never get married, I would never have kids. Now I’ve been married for 40 years and have a fabulous family. I learned much since my ignorant adolescent days. Living successfully with chronic illness requires trying, failing, getting up again and trying something else. Diagnosis depends on testing, trying a treatment, measuring its success or failure, and repeating the cycle until something works to decrease suffering. The tragedies are when trying never leads to a better life, or the team stops trying. Research faces a similar dilemma. Supposedly research tests hypotheses. One treatment or approach works better than another. Yet peer-reviewed journals publish articles that prove the hypothesis and doesn’t publish articles that disproves the hypothesis. What is this bias? I know that I have learned more from my mistakes than my successes. What if I couldn’t recognize a mistake or a failure and kept sticking with it? Thank God I can shift and try something else. I’m more skeptical when th change is degeneration of values. Less empathy, more fear, less generosity, more cruelty. I could appreciate more empathy, less fear, more generosity, less cruelty. Let’s honor rapid discovery of and learning from mistakes and courage to try something else. Let’s learn from those kids.
I’m attending an Entrepreneur’s Think Tank at the local Career Center and the Tech Sandbox in MA’s MetroWest region. I helped start something in 2012 called Pain Points in Healthcare Mini Unconference, now Healthcare Innovators. Each of these groups assembles people with bright ideas trying to set up a viable business. Often people with more passion than practical knowledge seeking to fill in their gaps. I am 63 years old, seasoned with energy, ideas, connections and yes – gaps. I’m older, good at what I do, and still in need of mentors and coaches. How else will I stay good at what I do? Searching for, finding, and offering mentoring is serious fun. Continue reading “#Innovation and #Mentoring”
I’m puzzled when people rate highly (very satisfied or satisfied) their experience in clinics and hospitals while still complaining about the experience. What is in the overall rating (would recommend)? Is it a comparison with other experiences that weren’t as satisfactory, yet annoyances still occurred? I have spoken with people and caregivers who say,
this experience was one of my best, but that’s not saying much. None of them were very good. Or seeing the nurse practitioner was great, but it’s impossible to make an appointment that’s convenient to my life. One organization I’ve worked with asked people and caregivers what matter most to them in their experience. They said, we want to know when there are staff changes: they developed a good relationship with a clinician or a direct care staff person and that person leaves the practice. When a question about that was added to the questionnaire, the scores dropped. Who knew they cared? Some organizations stop with high scores and don’t look further. It’s hard to keep up the routine of running the office or unit and still find time to listen in different ways (rounds, focus groups, referring concerns to someone with time to listen). It’s also hard to have time as people and caregivers to find someone who will listen to your concerns. I have to get to work or school or I’m not really sure what’s bothering me about this experience but I’m unsettled.
Wearing my many hats: e-patient, caregiver, nurse, informaticist, and leader, I am blessed with mostly positive experiences on my health journey. At worst, my experiences are seriously annoying. This week, attending a benefit for MITSS (Medically Induced Trauma Support Services), I’m reminded that not everyone is so lucky. As I scan the industry several problems with the experience of the people at the center of care (patients, caregivers, clinicians, direct care and support staff) jump out: Continue reading “What’s the Problem with the Experience of People at the Center of Care?”