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Just-in-Time decisions

Feb 26 2017
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Should I or Shouldn’t I? Managing Uncertainty

By Advocate, Caregiver, Clinician, ePatient, Informaticist, Leader, Researcher

Have you ever remodeled your kitchen? So many decisions: Cabinet style, drawers, finish, hardware, not to mention the floor and appliances. There’s you, your partner, a contractor, a cabinet person, a floor person, the appliance merchant. Decision after decision – should we or shouldn’t we? And nobody’s gonna die or get injured – hopefully.  All while trying to keep living, cooking, dishes, lunches. My wife and I were so stressed.  Kitchen decisions pale next to health decisions, especially medical decisions. It’s not like, “do I prefer this drawer pull to that drawer pull?” “Would I rather have wood or tile floors?” There is so much more uncertainty in health care.

Why me, why now? Who says? How sure are they? What if I do? What if I don’t? Will I still be able to ….? Who pays? What will they think? How do I get there? What aren’t they telling me? Are they listening to me when I say I can’t or I won’t? I just can’t think right now! Oh, this sure sucks! Read More

Apr 17 2016
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Experiences, experiments, reflection, action

By Advocate, Caregiver, Consumer, ePatient, Leader, Researcher

This week people told me stories about a moment in their health journey – Symptoms, people, relationships, procedures, thresholds, feelings.  Completely fascinating, inspiring, and gut wrenching windows into life’s challenges and tragedies. I heard,  I’m worried, the surgery worked, I can’t find a clinician who listens to me, my condition recurred – worse, my family’s supportive and grieving, how will I manage my job, I fell, my mother went into assisted living  (all from different people). Other people told me about work they’re doing – research, businesses, experiments.  I heard, let me tell you about the study I’ve been doing about multiple sclerosis, I’ve learned a lot about the stages that a person goes through as they gather information about chronic illness, I’m helping people succeed in their startup, I’ve found 5 people who have had the same success managing their chronic fatigue.  I read studies this week about reducing opioid use,  predicting resource use in chronic illness,  and improving the ability of individuals and clinicians to communicate and set mutual health goals.

Actually, this is a normal week. Experiences, experiments, reflection, action. All tie together. Each necessary, none sufficient.

Sep 27 2015
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The jumble of research

By Advocate, Caregiver, Clinician, Consumer, ePatient, Researcher
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.
Jun 07 2015
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Uncertainty and Comparative Effectiveness Research

By Advocate, Caregiver, Clinician, ePatient, Informaticist, Leader
Last week’s post  began a discussion of managing uncertainty in the health journey. That journey has many decision points. We can make some of those decisions ourselves and we can rely on others to make some decisions for us – family, friends, health care professionals. But isn’t health science-based?  Doesn’t research inform that science? Scientists knows that knowledge is never complete and that research can do no more than produce estimates of what we think is happening. Science, is in part, about odds and not facts. A particular medicine to be effective in specific circumstances for specific populations.  Unlike comparative shopping for a car or a toaster where I can go to Consumer Reports, health care is not so easy. There are so many medications to take for Multiple Sclerosis or high blood pressure.  Which should I take? This research is called comparative effectiveness research.

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Mar 19 2013
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Good Government – Office of the National Coordinator

By Consumer, Informaticist, Leader
I frequently write here about access to health information – necessary to just-in-time decision making, tracking status in meeting health goals, coordinating care among your health team – heavily weighted to individual action and team relationships. Effective communication within your finely honed health team is necessary, but not sufficient. You and your team still needs to access and share health information from all sources to coordinate your care. Much of health information sits in electronic tools: electronic medical records (EMR), personal health records (PHR), on the web, in smart phone applications (apps), and medical devices. We can share this information in emails and in the EMR, PHR and apps. Unfortunately, the tools often don’t link. They exist in different languages, requiring expensive translators (interfaces). In industry jargon, they lack interoperability. Often tools within one provider – a hospital, health care system, clinic needs these interfaces to work together. The problem is compounded when you see many clinicians in different systems, as I do. Multiple towers of Babel.  Read More
Jan 24 2013
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Magic levers of cultural change

By Advocate, Caregiver, Clinician, Consumer, ePatient, Leader
I’m traveling these days in many bands of committed people and groups striving to improve the health journey for themselves, their loved ones, and patients in general. These bands include advocates, novice and seasoned entrepreneurs, trade associations, providers of care across the continuum; and governmental and quasi-governmental entities. Each band slogs through terrain of incredulity, frustration, anger, hopelessness, and desperation with winds of dedication, confidence, hope, and possibility at their backs.

While traveling in these many bands, I periodically step aside to rest and contemplate change – process and cultural change. What do I expect, what do I want, am I using my limited energy wisely? Frankly, I don’t expect much. Cultural change in a complex system with nonsensical incentives, without clear leaders, with so much money, and seemingly stuck in cement is a bitch. I just aspire to a little better, some of the time. I want my family and fellow travelers to get the care they need, when and where they need it. I want to have fun while traveling. My personal energy is holding up – so far so good. But is my energy being used effectively? Do I make a difference