When my mother was dying I was a long distance caregiver. My mom made her own decisions, shared them with us, sought advice from me, asking me to research meds and treatments, wanted help with scheduling, wanted me to attend some of her appointments with her (mostly by phone) and gave me access to her electronic health record. Our family had open and dynamic communication. I was the health coordinator, my older sister helped manage business, my younger sister was her companion. These roles evolved over the years and solidified as our mom declined. Read More
What do people consider to be clinical data, when they’re not wearing the hat of clinician, academic, researcher, insurer or EHR vendor? We can all agree that pulse, weight, diagnosis, procedure, medication are all clinical data. But what about data that answers questions like:
- What does feeling worse (or better) look like?
- What works for me when I’m in pain (or scared)?
- Where will I sleep tonight?
- Are my kids safe? Am I?
- Am I treated with respect?
- Do I understand what doctors and nurses say to me?
- Where do I go when I have a question or I forget what I’ve been told?
- How do I get food from the grocery store?
- How much can I afford out-of-pocket for my medicine?
- What are the most important things in my life, for my future, for my health?
- Can I live with this amount of pain or discomfort or indignity?
- Do I have access to a computer or a phone?
I went to a meeting in Chinatown attended by parents with children on the autism spectrum going to Boston Public Schools. The attendees spoke Mandarin, Cantonese, Vietnamese, English, and Bureaucrat-ese. The parents helped each other advocate for services for their kids. Most only spoke one of those languages. After 2-3 minutes of speaking in one language, someone would raise their hand and there was cross-translation by the 2 or 3 people who spoke more than one language. This repeated for about an hour. I went home and my 7-year-old grandson tried to teach me to play Pokémon. I understood less than I did in Chinatown. Opa, you don’t understand this at all!! Read More
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.
When I first heard about Patient Reported Outcome Measures (PROM) I thought they were talking about pulse, blood pressure, weight, pain, anxiety. I didn’t start exploring further until 2012 when I was on the federal government’s Blue Button Initiative – clicking a button in your electronic medical record to download information from that record into human or machine readable form. I was on the Content Task Force. I cared about what information was to be downloaded. Based on comments I had received from you readers, I tried to get the Task Force to add what works and what doesn’t, when I’m scared or in pain. No luck, as if I was speaking Klingon. That started my exploration of PROM in England’s National Health Service. The National Quality Forum published a report in January 2013 about PROM. PROM’s have been developed for depression, pain, sleep, joint replacement. You can see an example on a Dartmouth web site called https://howsyourhealth.org/ where you can do a checkup of your general health and health risks.
PROM can be used for an individual or for populations, just like any research. For people, the challenges is having the chat with your primary care provider. Will they have time? Will they engage with you? For populations, the challenge is the methodology. Will everyone do it the same? Is it filled out only by people who have the knowledge, language, motivation to enter data? What about people who need their parent, neighbor, caregiver, child to fill it out? This is an exciting puzzle. I need to learn more.
- How does research apply to me? For example, a study reports that one treatment is likely to result in improvement 40% of the time. This treatment results in 10% fewer people dying within 5 years than that treatment. 20% of people taking drug A are likely to have some nasty side effect. If research is about groups of people (populations), how do I know whether to take one path or another, based on research?
- Health care seems to be a Tower of Babel – communication is tough in the best of circumstances. How can we best communicate complex information from clinicians to people at center, from people at center to clinicians, or between specialists?
- How do my personal values, religion, or culture affect research results?
- The person I care for has changing ability to understand (getting older, more confused, etc.). How do I best share research results?
- What about research that isn’t published, doesn’t prove the hypothesis? It all seems so uncertain. How is that communicated.
- What about word of mouth, popular media, or social media? How do I know what to believe?
- If I am one of the people who is a subject in research, how do I protect my privacy?