Monday, June 06, 2011

Unqualified Successes

This is a short retrospective about Massachusetts politics, but I present it for a purpose related to health care. In the 1970s and 1980's, there was a group of women who ended up in positions of great responsibility in public life. They were from the early generation of baby boomers who, in a different era, married and, instead of trying to balance raising children and holding a job, were stay-at-home moms. But they spent a good deal of their spare time involved with the League of Women Voters.

At the time, the LWV had a focus on citizen participation in local and state government. This was before public meetings were broadcast on cable television. LWV members would learn about current issues by attending governmental meetings and hearings in their city or town or at the State House. Then they would write up concise summaries for their members and others to read. It was a terrific way to get a civic education and also influence public policy.

As their children grew up, this same group of women entered the workforce and, because of their knowledge, often moved into positions of responsibility. Rita Baron, one of this group, created a word play by calling them "unqualified successes" because many of them, never having a chance to go to college, also accomplished a lot. It was the astute commissioner, understanding their capabilities, who would hire one of them to be the number two person in a state agency. (I put myself in that category when I asked Marcia Molay to be my deputy at the state Department of Public Utilities and the MA Water Resources Authority.) Others from this cadre of women would find their way to head up advocacy groups.

That was the path Rita chose, as she became director of the Charles River Watershed Association, an environmental advocacy group. She wanted to learn more about the activities of the Metropolitan District Commission, which ran the regional park system and controlled the watershed. Several years ago, she told me this story about using her LWV experience:

I went in one day. I ran into the secretary and said, "I would like to attend the commission meeting." She was absolutely aghast. The meetings were held in the commissioner's office, and the door was closed, and I said to her, "You know, Mrs. Silva, there is such a thing as an Open Meeting Law, and I'm a member of the public. I don't want to go in and disrupt anything. I don't want to partake in the meeting. I just want to sit there and listen and learn." So very timidly, she opened the door, and I slipped in and I sat in the chair right inside the door, and all the eyes looked at me. This is the first time anybody had had the nerve to pop in, and it wasn't too long after that that I would go in, and the door would be open.

Rita wrote a newsletter called The Streamer, which she sent to her members but also to an extensive list of public officials. Bill Geary, MDC Commissioner in the 1980s, used to say, "I learn more about the agency, what's going on, from reading the newsletter."

Rita explained her political philosophy:

The MDC felt that the agency owned the river. "This is our river," one of them said to me; and I said, "No, it isn't. It's my river. It belongs to the public. You simply have the management of it, but you don't own it. The people own it." That's when I came up with the phrase, "The People's River," and I pushed that idea for all it was worth. At the time, because the environmental movement was fairly new, there was great resistance to letting those people who don't know anything in on what we're doing. I could see it would just be a process of eroding that attitude.

Hmm, sounds a bit like health care, no? Who are the "unqualified successes" who will be the effective advocates for patient-driven health care? Who will break down the barriers to letting those people who don't know anything in on what we're doing? Who will demand the kind of meaningful transparency of clinical outcomes that will help drive process improvement?

Thus far, the patient advocacy movement is inchoate and not very effective. How will it develop into a barely restrained mob that demands and gets results from an often recalcitrant medical community?

Hint: The answer does not lie with a national movement, although information sharing will be helpful. It depends on local people who put pressure on community-based boards of trustees to hold local hospitals to a standard of care that will reduce harm to patients.


Beverly said...

From Facebook:

Not sure I agree with your local emphasis, Paul, although you have proven me wrong before. I fear that will just lead to pockets of activism with large swaths of 'desert' in between. I keep emphasizing, the time frame is urgent here; it's already been way too long.

Paul Levy said...

The most effective movements start locally, I believe. Then, national momentum builds. I think it is hard to go the other direction.

Paul Levy said...

From Facebook:

Steven: I don't think that health outcomes from local facilities is sufficiently high on the radar of the average citizen that there will be an organized group demanding results. Of course, I shouldn't underestimate the potential of the Social Media to accomplish anything. It will all depend on the efficacy of the information sharing you alluded to.

Jeni: Yup, Paul, your right, the patient safety movement started in pockets of the USA as a very local movement and look what it has become! But, where is it going?

Anonymous said...

Fortunately, not every one is a patient. But therein lies the challenge. When you are, or are caring for a loved one, you are exquisitely vulnerable to the behavior of caregivers (and payors). It is analogous to the risks of whistle blowing.

Disease-specific patient advocacy (like waterway-specific environmentalism) has growing venues for merging with other patient advocacy groups. The path to the next leap, from patient advocacy to hospital prevention, requires patient advocacy groups to demand not just better hospital care, but better health care. There is great risk now - which parallels that of environmentalism - that increasing scarcity of public resources and accelerating demands and degradation of conditions - weaken collaborative capacity. The risks to any individual to demand a seat at the table is high. So, look for the disruptive new niche. Where are the innovators in the room who are willing to prop open the door and put the patients before their peers? The risks to them are lower and the payoff could be leadership of the next frontier in healthcare.