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Researcher

Health Literacy Month

By Advocate, Researcher, Caregiver, ePatient, Clinician, Consumer, Family man 2 Comments
Last week I was describing a mutual friend to my son as pathologically optimistic. Overhearing us, my seven-year old grandson asked me what that meant.  I started in with glass half full, glass half empty. Oh, Opa, he interrupted me, I know what optimistic means, what does pathologically mean?  I was using language my grandson didn’t understand and he questioned me. I attend a weekly conference call of OpenID HEART, that I’ve written about here before, and I understand about a quarter of the discussion – very technical.  I am not as ready as my grandson to interrupt and question, even though when I have, my very basic language questions are respected and welcome.  Rather I usually take notes and ask the questions on the list offline. I often facilitate meetings. I try to pay attention to the language people use and explain acronyms or jargon.  If I see a furrowed brow, I ask the furrower if they have a question. As a direct care nurse, I made sure I created teach back moments when helping people at the center of care prepare to manage without me.
Often I have the sense that people consider literacy as a dumbing down – write to the fifth grade level, eighth grade – whatever. Many colleagues in any gig I’ve worked, say, communication sucks! I, however, am continually amazed that we can communicate at all. My friend, Helen Osborne at www.healthliteracy.com tells me that literacy is about language, age, culture, disability, emotion, and cognition (genetic and evolving).  That’s a lot to consider when communicating. My communication usually just falls out of my mouth.

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The jumble of research

By Advocate, Researcher, Caregiver, ePatient, Clinician, Consumer No Comments
Next week, I’ll be attending PCORI’s (Patient Centered Outcomes Research Institute) Communication and Dissemination Advisory Team meeting in DC. Research is ink on paper until people at the center and clinicians receive the results in an understandable and useable form: communication, translation, dissemination. I speak with many of you  about what matters to you. I hear you ask:
  • 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?
I’m hoping that we begin to assemble a framework for understanding communication and dissemination of research. Right now it seems like such a jumble.