Patients as Self-Advocates - Health 2.0 & The Health Management Continuum

Working in the nonprofit healthcare sector during the holiday season means every day is a graphic reminder that some consumers (the 'least' among us) lack access and advocacy.

Many patients have been repeatedly told that they have very little say in their healthcare process, since they have very little ability to pay.

Some folks at the US Agency for Healthcare Research and Quality agree we need to be doing more to involve patients in their own care processes.

View a brief Medscape webcast here.

The long and short of it is this: our system is not sustainable unless we create an environment that integrally involves patients in their care and encourages an atmosphere that harnesses the 'wisdom of crowds.'

We are beginning to see cracks in the system, and will see fault lines deepen as our use of overburdened, understaffed facilities increases.

We must encourage patients to consider themselves consumers of healthcare goods and services, but we must also teach them to become self-advocates for their own health and well-being.

Of course, as providers, practitioners, and policy advocates, we must remember some patients will not wish to be involved and will prefer to rely on practitioners as primary 'guides' and decision-makers.

Policy makers and administrators must acknowledge that involvement levels will vary significantly...for example, in any given 100-person patient population, we'll average 10 hyperinvolved consumers, 20 semi-involved consumers, 40 simply engaged consumers, 20 disintererested consumers, and 10 patients who 'opt out' of decision-making.

At the most basic level, supporting an atmosphere of self-advocacy requires:

1. Transparency: we must be able to access pricing and quality data.

2. Access: resources will be entrpreneurially designed that enhance consumers' ability to moniter, manage, and share wellness goals, data, information, recommendations, and experiences.

3. Infrastructure for disadvantaged consumers: funded support for those who cannot advocate for themselves (social services, case management assistance, federal/state/municipal funds, nonprofit involvement).

4. OPTIONS: an open market system where consumer are able to select from a greater variety of healthcare plans, goods, and services, and share information about their experiences.


One of the primary tenets of the Health 2.0 movement, guided by the next generation of H/HC leaders, is that our healthcare system is fractured.

Participants, practitioners, and patients alike view 'healthcare' as a series of disjointed, episodic occurances.

Get sick, see your PCP. Break your arm playing Thanksgiving football, head to the ER. Need a flu shot, head to the local retail/minute clinic.

All care, patient education, and support has been based concretely in a physical location (hospital, docs office, clinic, etc).

Health management, and the Health 2.0 movement however, dispense with the idea that patients are best healed by unrelated, disconnected provider occurances.

Health 2.0 is more accurately represented by a curve or contiguous timeline that spans a consumer's life and integrates all varied wellness/illness experiences, according to Matthew Holt of The Health Care Blog. *Blogger's note: Matthew is also one of my new bosses - more on that later.

Health 2.0 embraces the conceptualization of a longer term environment where consumers cycle repeatedly into and out of the healthcare contiuum.

Graphically, this contiuum would be drawn as a timeline. Each consumer would appear repeatedly along the H/HC contiuum represented by a series of 'hits' on the H/HC system, (hospital stays, doc visits, PT appointments) located along a horizontal axis - someday soon I'll figure out how to draw this and post the Health Management lifeline, unless somebody beats me to the punch.

Holt describes the movement in further detail in this Modern Healthcare article (first part of a series):

""The other thing that's going on that's contemporaneous is a societal shift in which there is an understanding that medical care is an ongoing process rather than a series of episodic events," Holt says. "The relationship between physicians and patients is becoming more of a team rather than a priest-supplicant relationship." "

This holiday season, I'm giving thanks for the quality healthcare I've 'consumed.' I'm giving thanks for the fact that there's work yet to be done, and people interested in improving the industry. I'm also giving thanks that there are Health 2.0 prophets carrying the gospel of consumer-directed healthcare to policy-makers.

This holiday season, ask yourself what your organization is doing to bridge gaps in access/advocacy and establish services that provide health management along the ENTIRE length of a consumer's lifeline.

If this question is difficult to answer, there's no better time of year to strengthen your resolve and prepare your organization for the challenges ahead.

Attending the next Health 2.0 event, "Connecting Consumers and Providers" (March 3-4th in San Diego) is an excellent way to break out of your comfort zone and jumpstart your strategic planning. Click here for more info.