Learning What Works

By September 10, 2017 September 19th, 2017 Caregiver, ePatient, Researcher
Learning What Works

One of my passions in life is Learning What Works for people on their health journey. As we travel, we make choices – endless choices.  Should I do A rather than B? Eat the brownie or don’t eat the brownie? Take a walk or don’t? Go to the doctor or wait until I feel worse? Fill the prescription the doctor wrote or don’t? Have surgery or wait and see? Stay home with my dad with dementia or arrange for home care? Or we make no decision at all (a decision in itself). Sometimes people search for help in making these choices. Help from professionals on their care team, from their care partner, from Dr. Google, from their mates or social network.

Learning what works is an experiment.

A person tries something – it worked or it didn’t – for them. To know it worked means that the person has an idea of what they are trying to accomplish (See my post on personal health goals). And that they think there’s a relationship between what they tried and what they accomplished (or didn’t). I have a fever, took an aspirin, and the fever dropped. I have heartburn, stopped eating chocolate, and now less heartburn. My MS symptoms are getting worse. I reduce manageable stress. My symptoms subside. What’s important in all this is that I know what I want, I try something, and I feel better or accomplish what I wanted (or didn’t). Some people, like me, have a written care plan and keep track with lists and spreadsheets. (See my post on planning personal care)  Most don’t.

Learning what works can get pretty complicated. Often there’s tension within what we want. I want my MS to progress as slowly as possible and I don’t want to do anything that messes with my pathological optimism. But if the infusion or the pill that slows progression makes me depressed, what do I want more? The progression or the depression? I probably wouldn’t take the drug because I’d rather be mentally and spiritually healthy than physically healthy. But what if I had unmanageable pain and the only effective pain med made me depressed? I don’t know what I’d do, I can be a wuss about pain. I have had moderate pain (neuritis), declined the med, and tried acupuncture, massage, and chiropractic. Used in combination the pain became tolerable without the med and I’m still pathologically optimistic. I learned what works. For me.

How do people learn what might work? Where do they find actions to try that might work? They hear stories, they read something, they get professional advice, they study research. I love stories about what works. I especially love it when several people have a similar story about what works for the same problem. There’s a ton of advice out there, solicited and unsolicited, professional and not so professional. I tend to like advice that agrees with what I already believe. Not very scientific, but that’s me. I’m human. These are learning what works from individual experience.

The experience of groups of people (populations) can lead to comparative effectiveness research. Comparative Effectiveness Research (CER) is the direct comparison of existing health care interventions to determine which work best for which patients and which pose the greatest benefits and harms. But learning from research can get complicated, too. Most research is done about medical treatments – existing medical treatments. If what I want is spiritual, financial, or functional, or involves cost, sexuality, or personal safety how does research handle that? Perhaps I’ll discuss this in another post.

Learning what works involves data. Data can be in the story a person tells, the lists I keep, or the research researchers do. Data by itself is hot air or ink on paper until someone decides what that data means and we use that meaning to do something. So, data + analysis or interpretation -> action. Hear a story, decide it makes sense, try it for yourself. Do research, create a protocol or rule and mandate that people follow it. The puzzle to me is the link between what works for me and what works for groups of people. I don’t have heartburn now that I don’t eat chocolate. I tell you that story and say, You won’t have heartburn if you stop eating chocolate. Does my experience mean you’ll have the same experience? Maybe or maybe not. Here’s a different angle. Research led to a protocol that says if you use a risk calculator and have a 7.5% or higher chance of having a heart attack, stroke in 10 years you should take a statin (cholesterol lowering medication). What does that mean for me? The protocol was based on experiments of groups of people. The American College of Cardiology felt that a 7.5% chance was significant enough to instruct doctors to prescribe and encourage people to take the medicine (statins). Data + interpretation -> action.

How goes your experiment of one?

How do you learn what works? For you? Whose advice do you take? How do you know whatever you’re doing is working? Do you adjust if it doesn’t work?  I’ve been writing and talking about setting personal health goals,  planning your care, and learning what works. Next time we’ll think about adjusting when the plan doesn’t work.

See Setting Personal Health Goals, Creating Your Health Team, and Learning What Works on my YouTube Channel (Please subscribe)

Onward.

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