Harmonic Convergence

Consider the fabric of best health. The Quadruple Aim (Best patient and clinician experience, best population health, reduced cost) is that fabric. The weave of that fabric is information about our personal and collective health and health journeys. The warp is learning and continual improvement.


Quadruple Aim: Improving the patient experience of care, improving the health of populations, reducing the per capita cost of health care, and improving the work life of clinicians and staff.


Health information includes the data in our health records (paper or electronic),  patient generated health data (PGHD) (vital signs, activity, experiences, symptoms, history, etc.), census and community data, and perceptions collected from surveys, focus groups, and chatter.  Learning can be formal and structured as in research and analysis, clinician consultation and advice, education and training, and tests of change as in Plan, Do, Study, Act  (PDSA) or informal as in social and traditional media, child rearing, personal experiments (try something, see how it works, try something else), family, neighborhood, and water-cooler conversations.

I spend much of my time participating in Patient Centered Outcomes Research (PCOR) and efforts to improve person-to-person and electronic data sharing. Data sharing can be communication among your health team members during transitions in the health journey (including you, me, and our care partners) and accurate electronic exchange that we know about and give permission for.

 


PCORnet: The National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). It is designed to make it faster, easier, and less costly to conduct clinical research than is now possible by harnessing the power of large amounts of health data and patient partnerships. In the process, it is transforming the culture of clinical research from one directed by researchers to one driven by the needs of patients and those who care for them.


 

I take part in two groups that seem way over my head, but are critical to health information and learning: PCORnet and OpenID HEART. I attend as a Patient Stakeholder because I’m convinced that people and their teams need the best information possible. We need to be sure it’s information that’s important to our lives and health journeys, and we are aware of and have some knowledge and control over the exchange of that information. I try to understand these groups’ language, methods, and culture while bringing in the patient  perspective. It’s a challenge as I know enough to be dangerous. Both groups welcome me and are patient with me.


OpenID HEART: The goal of the Health Relationship Trust Working Group is to harmonize and develop a set of privacy and security specifications that enable an individual to control the authorization of access to health related data via RESTful APIs, and to facilitate the development of interoperable implementations of these specifications by others.


 

This week I made a leap in understanding both groups. I’ve grown from infant to toddler. I was able to make a connection between the two, asking How can we be sure that electronic data being exchanged is correct in a notoriously inaccurate electronic health record? Is the data being mined and exchanged really the data that patients need and want to be exchanged? What about care planning data? They don’t have the answers, but they’re asking the questions. And they need each other. So cool. A harmonic convergence!

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