Over about a decade a group of patients and providers collaborated to understand what patients and their family and friends wanted. While we did a lot of work with Microsoft Health Vault and Washington State Health Record Bank program.
> Since those days, the medical establishment has reframed this patient-created tool to diminish it dramatically and twist into a medical system tool, calling this distortion a **Continuity of Care Document**. It originated as a profoundly social tool centered on the person that the medical establishment insists on calling "the patient". Sort of like "the dog" or "the car".
The Shared Care Plan (PHR) can be printed and used. We created a real time electronically produced and printed one page summary (two sides) that precisely met the physicians needs during a visit. Maybe I can find one.
In addition to the SCP and developed by the same people in parallel was the invention of the Navigator-Coach role, which later became transmuted into a different idea, again one at the mercy of the medical system--"The Community Health Worker." In fact the disjointed parts of the medical system are fighting to this day over the control of this pivotal role.
digraph { rankdir=LR SCP When [style=filled fillcolor=yellow] Where [style=filled fillcolor=brown] Why[style=filled fillcolor=lightblue] Who [style=filled fillcolor=red] How [style=filled fillcolor=green] What When -> Where Where -> Why Why -> Who Who-> How How -> What What -> WhatNext SCP -> When SCP -> Where SCP -> Why SCP -> Who SCP -> How SCP -> What SCP -> WhatNext }
# WHEN Started in 2000 with Robert Wood Johnson Foundation's funding "Pursuing Perfection", a multisite, multi-year grant administered by the Institute of Healthcare Improvement to attempt to learn how to Redesign US Healthcare System. 2000-2015 Ongoing?
# WHERE The Shared Care Plan originated in Whatcom County, Washington.
# WHY People with chronic illnesses wanted a tool to help them manage their illness and their relationships with people and institutions of their choosing.
# WHO - People with chronic medical conditions that were too difficult for one doctor and one patient to manage by themselves. Typical relationships included: - Family Care Givers - Family and Friends - Community Health Workers - Doctors--primary and specialists - Pharmacists - Computer Software Magicians - Washington State government advocates: Later the State of Washington got involved creating the Washington State Health Record Bank project. Microsoft got involved and created MS HealthVault.
# HOW A small group of people with complex chronic conditions were paired with a computer interface designer, Dawn Gauthier, and the designer was paired with a HTML programmer. They moved from a white board to a text editor, six months later into web pages, and two years later Nik Ivancic lead the work to transform web pages into a computer program with the capability to allow patients to control access at the level of individual items and the ability for the **PHR** server to communicate with other servers, e.g. **Lab** data servers, **Medical** record servers, **Pharmacy** servers and Microsoft HealthVault (which was inspired from the Shared Care Plan and developed together, in synch.
Everything that did not work as hoped was a lesson more than a setback. Failure was never considered. Still isn't. The trust that patients palced in us is too important to every stop working to accomplish their three simple requests. The trick is to find the scale and people who will implement these.
# WHAT A user-created and user-managed document created in a text editor (MS Word), printable, shareable--that changed the collaborative conversations and the clinical outcomes. Saved lives. Decreased costs (read revenue to the system)--which resulted in a profound lack of support by **Hospitals**, **Managers** of physicians, **Payers**, and ultimately by **Politicians**.
# WHAT NEXT Neighborhoods must find ways to produce and sustain their own Navigator-Coaches who can be Lifeguards and Translators as well. They are the life saving connection between people and the complex and internally competitive Medical System. Navigator-Coaches must help people use Shared Care Plans.
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More to come.
* [x] Questions and Discussion