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.”
So, where are health, wellness, and medical decisions made? Some do happen in the clinic, doctor’s office, or bedside between a person, their caregiver/partner and a clinician. Most happen independently away from the clinician – at church, the water cooler, dinner, in bed, driving – anywhere. Then a visit with a clinician occurs – “I want this, I want that.” I think there’s a period before a decision is made and a period after. And it is usually circular. Something happens: new pain, change in ability to care for ourselves, more unhappiness or stress. As we digest this new happening and give it a label or diagnosis. We may or may not act – a decision either way. Once a decision is made, with or without a clinician, we may have second thoughts or questions. What did we just decide? It’s the middle of the night after making a decision. We’re confused. Maybe it’s too hard to carry out the plan. Or we decided something and there is no plan.
I think a lot about Clinical Decision Support and health and wellness decision support. How do we make research (evidence) ready at the point choices are made by people, wherever and with whomever? It’s complicated.