1. Collaborating with the Formal Health System
Self-help mutual aid groups for health-related problems are gaining significant attention. Such groups have long existed for a wide variety of conditions, ranging from organizations like GROW for mental health to groups for Parkinson’s disease, Multiple Sclerosis, and other chronic conditions. Today, a self-help mutual aid group exists for almost every condition identified by the World Health Organization.
With the advent of managed care, one might have expected self-help groups to be a fully integrated part of the healthcare system, especially because clinical research has shown group participation to impact health most favorably:
- Metastatic Breast Cancer: Randomized clinical studies in the 1980s by Dr. David Spiegel demonstrated higher survival rates for cancer patients participating in support groups.
- Coronary Heart Disease: Dr. Dean Ornish’s program for reversing heart disease makes extensive use of support groups. Dr. Ornish noted:
“At first I viewed our support groups simply as a way to motivate patients to stay on the other aspects of the program that I considered more important—diet, exercise, stress management. Over time I began to realize that group support was itself one of the most powerful interventions.”
- Self-Care Handbooks: In a well-publicized study, the distribution of the Healthwise self-care handbook to communities in Idaho resulted on average in an 18% drop in emergency room use.
- Healthcare Utilization: A paper by Keith Humphreys and Rudolf Moos reported that psychiatric patients who received treatment emphasizing 12-step ideas and group attendance relied significantly less on expensive professional services, compared to a control group receiving non-self-help-oriented treatment.
The Friction Between Two Cultures
Despite these clear benefits, successful collaborations between the formal health delivery system and the informal world of mutual aid remain rare.
Hospitals and managed care organizations are often unaware of the variety of groups available, do not manage referrals systematically, and are not abreast of the clinical literature. Some HMOs fear liability for advice shared between patients in a mutual aid setting, or worry about patient confidentiality.
At the same time, self-help groups are protective of their autonomy and privacy. Friction is common. Patients and families living with chronic conditions often report resistance from medical administrations, such as withholding meeting space, refusing list sharing, or criticizing group leaders.
At bottom, there is a cultural disconnect: formal healthcare emphasizes the “medical treatment” side, while mutual aid emphasizes the “shared care” side. This is where intermediary organizations like the National Self-Help Clearinghouse play a vital role. By educating hospitals and HMOs on the clinical and cost-effectiveness of patient groups, and by offering independent referral paths, clearinghouses bridge this gap of trust without compromising group autonomy.
2. Active Consumers: The Key to Managed Care
By Frank Riessman
Often overlooked in discussions of healthcare reform is the importance of the active consumer in cutting costs and improving care. A large body of evidence demonstrates that active consumers expand services, add to the productivity of the healthcare system, and improve their own health outcomes.
At the simplest level, consider how diabetics monitor their own blood sugar. At a group level, psychiatric patients discharged from hospitals who join support groups function far better in the community, adhere to medication regimens more fully, and avoid hospital readmissions compared to control groups.
What Happens in a Support Group?
Support groups produce these outcomes through three main mechanisms:
- Shared Experience: Members share in a unique way because of the similarity of their conditions. Being understood is therapeutic.
- Experiential Coping: Members exchange practical, day-to-day coping techniques related to their illness.
- Mind-Body Connection: The emotional support that emerges in mutual aid groups counters the social isolation that frequently accompanies illness, triggering positive physiological and mental outcomes.
For the major chronic illnesses of our time—heart disease, stroke, diabetes, hypertension, and arthritis—patients require far less intense acute medical intervention and far more continuous support, coping skills, and peer encouragement.
As health economist Victor Fuchs wrote: “The greatest potential for improving health is through changes in what people do and do not do for themselves.” Active consumers are not just patients; they are a healthcare organization’s best partners.
3. Nursing Homes: Empowering Residents
A Letter to the Editor of the New York Times (September 25, 2000) By Frank Riessman
Most discussions on improving care in nursing homes focus on “supply-side” approaches, such as hiring more and better-trained healthcare workers. While an increased supply of professionals is important, we must also include a “demand-side” approach: namely, cultivating a self-help and mutual support emphasis among both staff and residents.
Demand-side strategies require active roles for the residents of nursing homes, including participation in resident-led support circles.
At present, many nursing home residents suffer from a demoralizing, trained incapacity to help themselves. Increasing professional services alone will not address this. We must build peer structures within these institutions to empower residents, restore their agency, and value their mutual support.