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Last month, in Communicate What? #CarePlanning, I declared the #CarePlanning hashtag, and told from personal experience the importance of communication in enabling participatory care. I ended with this – my perspective as the person who has the problem and the only person who is always there at the point of care:

I have goals and a plan. I monitor and communicate it.  I’m the connector for my team of more than a dozen. This is person-centered #CarePlanning.

The Tower of Babel (Wikipedia - Peter Brueghel the Elder)

The Tower of Babel (Wikipedia – Peter Brueghel the Elder)

Our health teams struggle to communicate at transitions (between team members, when adding a new team member, between people, offices, and settings) – it’s a perfect tower of Babel.

In its simplest form, communication is who, what and how.  Who needs to communicate? What do they need to communicate? How will they communicate?

#CarePlanning focuses on the what. What are the goals of the person on the health journey? Who’s going to do stuff to get there? When? How will these goals and activities be tracked and shared across time and settings?

Let’s engage to better understand #CarePlanning from the point-of view of the person (mostly as patient, sometimes not; usually including family and/or caregiver), rather than from the point-of-view of the doctor, the hospital, or the insurer. What does the person want to accomplish, who on their team (including the person) is going to do what? by when?

Let’s also narrow our focus to #CarePlanning that can be communicated during transitions between settings rather than within settings (For example,  between home and clinician office, between hospital and rehab center, between home and work or school. Not within the home, hospital, clinic, or agency).

Next, let’s look at #CarePlanning during illness rather than wellness or prevention. Edward Suchman devised an approach for studying illness behavior (Social Patterns of Illness and Medical Care, 1965) with five key stages of illness experience:

  1. symptom experience
  2. assumption of the sick role
  3. medical care/healthcare contact (my italics added)
  4. dependent patient role
  5. recovery and rehabilitation.

Finally, let’s be sure to include the social determinants of health – or as we non-academics call it, life.

Sample Care Map (c) 2012 by Cristin Lind, mother of a child with complex needs

A Care Map drawn (c) 2012 by Cristin Lind, for her child with complex needs. From her blog “Durga’s Toolbox

So, we’re considering #CarePlanning from a person point-of-view, between settings, when people are sick, and including life, not just medicine.

#CarePlanning happens when we talk to and text with each other, when we write stuff down (lists and logs) and electronically in electronic records and apps. I’ve never met anyone who doesn’t strongly advocate for and believe in #CarePlanning; it’s a no-brainer.

At the same time I haven’t yet seen a universal description of what goes into a person-centered care plan. Without that, how can we know whether we’re doing it right? How can we improve? How can we achieve the best possible care, given the resources we have? How can we teach it?

What are the minimum data elements for a care plan – verbal, written, and electronic formats?

I’ve been working on this with @GeriLynn Baumblatt from Emmi Solutions, @BevinCroft from HSRI, @yogileana Balcu from the Society for Participatory Medicine, Todd Katzman from Boston Children’s Hospital, and Juhan Sonin @JSonin, @Beth11Herlin, and Edwin Choi @rexcraft8 from Involution Studios. See Involution’s fine work on their Care Plans page

I submitted the #CarePlanning hashtag to Symplur, an organization that logs and tracks the thousands of healthcare hashtags on social media. (What does it say that there wasn’t one already?)

One of the next steps is to  inventory the data that the many vendors, associations, advocacy and information standards groups, and professions call care planning. Would you like to join us? Leave a comment on this post and I’ll get back to you. More to come. Onward!



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