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Personal Health Management Systems–Conumer-centric, Consumer-controlled & Community-situated.
Well that is a mouth full. This rather nuanced concept has emerged and clarified itself over the last 7 to 14 years in Whatcom County, WA.
We believed that we were patient centric–thinking of (and for) the patients way back in 1993 when the idea of a Community Health Record began forming into a reality. We developed one of the most electronically integrated communities in the USA over the next seven years. THEN we invited patients to talk with us directly–to have their own VOICE at the health professional’s table. Once they trusted that we were seriously interested in their concerns, not just our own efficiencies, they began to design the information and communication system that would serve their interest primarily, and our interests secondarily. (Isn’t that the way it is supposed to be anyway? In his book, The Careless Society, Community and it’s Counterfeits, Northwestern University professor John McKnight describes the consistent dynamics which invert the client into a servant of the professional enterprise. If these dynamics and their consequences are of interest to you, Donald Schon’s book, The Reflective Practitioner, offers potential solutions to McKnight’s dilemma. I digress.)
A note on the terms “patient” and “consumer” — The idealized relationship between physicians and clients does not always turn out ideally. Asymmetries of power and knowledge can tip the ideal upside down. “Consumer” certainly leaves much out of the ideal relationship, but it does make it clear who is supposed to be in charge. I would love to know of a better term that keeps the client’s interests (from their perspective) truly as the object of the enterprise.
“Consumer-controlled” is a term that creates anxiety among professionals. (Keep in mind that HIPAA gives professionals broad authority over the patient information, without much input or oversight by patients.) The patients were very clear with us. They need their own records and their own communication tools in order to play their role in their own health. They ask us to help build an information system subject to THEIR CHOICES about who they share what with for what purposes. We began building the Shared Care Plan which evolved into Congral’s Personal Health Management System (PHMS).
“Community situated” — What is the scope and scale most useful to consumers? Most efforts to create PHRs are driven by interests that are not entirely coincident with the consumers’ interests; e.g. providers, health systems, payers, employers, or internet application hosting providers. Currently the people who must interact to create health and to manage illness are co-located in geographical communities–not exclusively but by-and-large. I try to keep in my mind that human meaning is created socially and generally in face-to-face interactions. So, any Personal Health Management System needs to be situated in, or fit into, the community in which the consumer lives. The PHMS needs to add value for the key stakeholders in ways that encourage interaction–because the real goal is behavior change which comes from new meanings. The stakeholders, for a variety of reasons, should ideally include–consumers, their friends and families, physicians, pharmacists and other providers, hospitals and other health care institutions, employers, the emergency management system, and finally government and various agencies and membership groups.
“Personal” — Everyone who would hire their own lawyer needs to have their own health information management database, controlled by them for their own ends. The patient’s health management system has different interests than the physicians’, the payers’, the employers’, the hospitals’. The most straight forward example is medication lists. Patients want to know what they are taking. Physicians want to know what they prescribed. They actually cannot afford (practically or legally) to know what the patient is taking, unless they are paid to manage this new and ever changing information. Of course physicians and hospitals etc. need their own records and management databases. Why shouldn’t patients have similar useful tools under their own control?
“Health” — Currently the US health industry is best described as an illness industry, and maybe that is just fine. Health should perhaps be the domain of others, of communities, churches, governments, popular movement–rather than costly professional experts, highly trained to manage when things go wrong–disease. The PHMS should enable healthy decisions and facilitate social interactions which support healthy life styles. Employers certainly have aligned incentives with consumers to manage health. Employee wellness programs should be part of PHMSs. Enlightened communities should underwrite such integrated wellness programs for the population. Everyone benefits.
“Management System” — It is about knowledge, decision making, measurement and trending, communicating, encouraging, alerting, and closing loops. It must enable systems of learning and behavior change and mutual support. Ideally it connects with other stakeholders to create the first system of health, outside of a very few successful HMOs.
Then you need an affordable (free) infrastructure for secure, private storage of interoperable information. Microsoft Health Vault.
There are many vested interests who will not favor this amount of choice for consumers. They will resist the untethering of consumers from the business who hope to bind them and reduce their choices.
Who will win the struggle to prevent consumers from accessing their own clinical information? I am sure the consumer will prevail. In the long run even those industry segments that now are disinclined to support such freedom for consumers will benefit from this turn of events. And of course all of us and our children will benefit from this new found freedom to choose.
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