The majority of health problems in modern developed countries are self-inflicted, the results of lifestyle choices. These problems don’t respond to a pill–or even to bariatric surgery. Moreover, the medical profession hasn’t found ways to change lifestyle.
For instance, one study found that only one of six overweight adults in the US have sustained a weight loss–and that was an improvement over other studies. Another site claims that 90-95% of all dieters regain their weight within five years. It’s encouraging to note an 80% improvement among people with obesity who get treatment–but the source doesn’t say what “treatment” is. It apparently goes far beyond advice and Weight Watchers–so only 10% of obese Americans get treatment in the first place.
Health problems are killing us, and bankrupting us along the way. It’s well known that a tiny percentage of patients generate the most treatment and the highest health care costs, as Atul Gawande pointed out in a famous New Yorker article.
Of course, lifestyle doesn’t lie behind all hot-spotters (for some we can blame birth defects or other debilitating accidents, and for others we can blame over intervention in dying people), but a lot of them just just exhibit exaggerated versions of the common behavior problems most Americans face: bad eating, drug use, lack of exercise, etc.
A number of months ago, I met with a leading public health expert in Massachusetts. After I walked down to Arlington’s premier professional rendezvous, the Kickstand Cafe, we talked over oatmeal with nuts and fruit about behavior change, public health, and patient engagement, which I prefer to call patient empowerment–or as he put it, “patient activation” (which sounds to me opening an account at some business).
The expert and I shared another connection besides our mutual interest in health. We are active members of the Greater Boston Interfaith Organization, a 20-year-old community organizing group that is part of the Industrial Areas Foundation founded by Saul Alinsky in 1940. So we started asking each other what a community organization could do to improve its members’ health. GBIO wasn’t the first to join the universal coverage movement, but the muscle of its 50 congregations and 10,000 members became key to passing Massachusett’s 2006 health care act, often called “Romneycare” and the basis for the national Affordable Care Act. I personally lobbied a leading State Senate member and sat in on a hearing where Mitt Romney defended his individual mandate.
Since passage of the law, we’ve built relationships with government and industry figures and helped create the policies that made universal coverage universally popular in the state.
However, rising costs are still a problem. The state also has a long way to go to address key behavior changes in the population.
With the major features of reform in place, GBIO has been sidelined to a relatively reactive role, such as protesting a merger involving the Massachusetts mega-provider, Partners Health Care. We’d like to play a constructive role as well.
The key may be support and community–what GBIO is built on, and what sick people also need. Many clinics create support teams that do things such as send text messages to encourage healthy behavior among patients with chronic conditions, and mobile devices make patient monitoring feasible, but there are limits to the level of engagement clinic staff can create.
Other programs involve family members, whose intense relationships can make their messages powerful. But we can’t always depend on family members: they may be busy, disengaged, overwhelmed by the patient’s needs, or burned-out after years of failure to improve. They may be addicted to the same unhealthy food choices or behaviors that are making the patient worse, and perhaps even enable those behaviors. (See the movie “Fed Up” and consider the families’ roles in the cases they document.)
So is there a role for the community? There are many calls in the public health sector for community involvement, like an emergency physician’s observation that health is intimately tied to issues such as literacy, employment, transportation, crime, and poverty. One objective of an ONC six-year Federal health IT strategic plan is to “Protect and promote public health and healthy, resilient communities.” The idea of making a whole town responsible for its residents health makes Esther Dyson’s “Way to Wellville” intriguing, even though it’s a rather mixed bag of disparate elements.
The religious centers, labor unions, and other organizations making up GBIO represent the most important instances in the US of the “third place” described in the classic Ray Oldenburg book, The Great Good Place. People in these places step outside the roles and constraints they deal with at work and in the home. They take on new roles–and perhaps we can make those healthy roles.
One model is provided by a GBIO initiative on debt. Like most of our activities, the initiative was launched after hundreds of discussions among congregants about the problems that have the biggest impacts on our lives. Numerous political campaigns, of course, have been conducted around debt–student loans are a highly publicized example–but GBIO started with a personal program called Moving from Debt to Assets. Through courses led by local financial experts, support groups, and other contacts, the program helped 875 people extract themselves from debt and start saving money.
What could congregations do to support people whose problems are with their bodies rather than their finances? Could peer support, regular guidance, and even a generous dose of religious motivation overcome the dismal statistics for behavior change? Here are some ways community organizations and their member congregations could make a positive impact on their members’ health:
- Invite speakers to congregational events and even services to describe paths to better health, along with recent discoveries.
- Organize peer support groups. Some expert guidance may be necessary here to guarantee the privacy of what people say.
- Carry out group discussions in the classic community organizing manner to discover local health problems affecting the congregation–such as trucks idling at a construction site, or a lack of fresh vegetables and fruits in local stores–and organize for change.
- Advocate for patient access to records, the provision of coordinated care teams to patients who need them, and other improvements in provider behavior.
- Use the network of “caring committee” members to help individuals find doctors, and accompany those who need help with translation, medical terminology, or understanding care plans.
- Encourage the use of appropriate health IT tools such as educational apps and sensors, and provide training.
- Create a healthy environment within the congregation itself, such as an examination of the food served at community events.
- Draw on religious traditions and texts to provide inspirations that link health to leading a good life.
Both top-down change (regulation) and bottom-up change (patient empowerment) are key ingredients to improving health care. But something critical also lies in between–community action. Proven community organizing techniques and advocacy among institutions in the patients’ lives might make all the difference.
Andy Oram is an editor at O’Reilly Media.