Let’s continue the conversation about making choices along our health journey. I call this choice-making informed decision-making. Some call it shared decision-making, others call it clinical decision-making. Common to all three labels is that decisions are made based upon evidence (research) when evidence is available. Remember that evidence says that under specific circumstances for certain groups of people (populations or communities) choice A is more likely than choice B to lead to a desired goal or outcome. For me (an individual) sometimes it doesn’t. And, in spite of $billions spent on research, most health decisions lack a supporting body of evidence – just too many decisions out there. As a patient and caregiver, I know that most of my health-related decisions aren’t clinical. They involve my behavior and my team’s behavior, the environment, my genetics, my social circumstances, the community I live in, and, of course, luck. I prefer informed rather than shared because I bristle at the idea that clinicians are sharing the decisions with me. It implies an unfortunate power dynamic. Having said all this, I don’t actually care what term you use. It’s about making the best choices we can. I need help making choices. I’m on a quest to make choices that are more likely to help me get to my health goals and make my medical problems go away or be more tolerable. My quest is fairly disorganized and sucks more energy than I prefer. I’m always looking for resources (people, ideas, tools, testing space) to help me be a better decider.
To this end, I am on the Steering Committee of an AHRQ (the federal Agency for Health Research and Quality) funded Patient-Centered Clinical Decision Support Learning Network (PCCDS-LN) as a patient and caregiver stakeholder. I attended its second annual meeting (#PCCDS2017) this week. The Learning Network is rolling out a Resource Center. As a seasoned patient and caregiver with some brain space and energy to spare (yeah!), what do I want in such a resource center? I think that patients and caregivers like me mostly gravitate toward those who listen to and value our lived expertise. We tend to be more action-oriented than academic. I want this Resource Center to be helpful and fun. We would use the Resource Center to:
1. Find and network with other people and communities learning to participate in and advocating for informed decision-making by patients’ health teams.
2. Access tools, tips, and testing spaces that improve our own and our clinician partners’ abilities to engage in informed decision-making
3. Accept our contributions of tools, tips, and testing spaces that have worked or may work for us
4. Point us to opportunities where we can be testers for tools and tips under development
5. Host or lead us to conversations about troubleshooting and reducing barriers to successful informed decision-making
6. Inform us about local, state, and national policy initiatives we could join that promote informed decision-making
What do you need a Resource Center to do? Tell me. I can and will use my seat at this table for us. Comment here.
Watch this on YouTube: https://youtu.be/WpCKlPBQI4k