Tuesday, May 6, 2008

Mo' Power to Patients

To the AMA and their know-it-alls:

Patient activism has become essential in attempting to change the attitudes of the biomedical community towards consumer demands. Fundamentally, the movement has produced radical changes in the paternalistic role of medical professionals in relation to patients, creating a more equitable association between the two groups. Two powerful examples of patient activism are the Women’s Health Movement (WHM), and the popular AIDS activism that took place in the 1980’s. Herein, I hope to jut on the importance of patient activism to consumer health, and I also wish to portray these two movements as pivotal events that have contributed to the changing facets of health care.

The Women’s Health Movement was historically important because it questioned the nature of medical knowledge, critiqued medical professionals for conceptualizing their bodies as naturally predisposed to illness ([1], Zimmerman 387), and eventually led to the creation of Self-HelpPolitical Action Organizations (Zimmerman 389). Gradually, women became aware of the gender-specific views that existed in health care; these included notions that illnesses among women were innately connected to their reproductive system, and that male-centered thinking dominated medical information (Zimmerman, 386). As they recognized the lack of control they held over their own bodies, they organized and established self-help groups and political action organization to create awareness and mobilize resources for health care improvements. Their standpoint was centered in the belief that if women shared control in health decision making and “brought female-oriented perspectives to balance male views,” health care would be improved (Zimmermna, 385). Today, these groups are effective promoters of health awareness [2]. 

Likewise, the AIDS movement of the 1980’s confronted and effectively challenged AIDS health officials by questioning the organization and pace of research on AIDS treatments. They united to voice their opinions, and profoundly impacted the biomedical community. AIDS activism led to a number of activists becoming members of powerful “institutional review boards” that evaluated “the methods and ethics of clinical trials of AIDS” (Epstein, 609). They “sat as regular voting members on the committees of the AIDS Clinical Trials Group (ACTG) [3],” and worked in conjunction with academic experts in the field (Epstein, 609). Their activism influenced the course of action that was taken in research treatment regiments, and regulations on research protocols. Most importantly, like the women’s health movement, it created awareness of important health issues affecting consumers of health care.

The WHM and AIDS movement are manifested in various forms of patient self-empowerment that involve cyberspace communities. As Goldstein states, 

The internet provides a means by which individuals suffering from unexplained symptoms, or recognized conditions, can reach out and become part of a virtual community of suffering, exchanging information on symptoms, diagnoses, illness experiences, treatment, and research with other individuals scattered across the globe (Goldstein, 121).

Although it’s difficult to evaluate and control the flow of information in these sites (Goldstein 122), they provide an excellent space to convey subjective experiences among sufferers and provide anonymity for patients to freely express their concerns. As oppose to the objectivity that biomedicine stresses, these groups place high value on subjective experiences (Goldstein, 128). Consequently, knowledgeable sufferers (known as “lay experts”), can share their experiences with others and create the kind of practical awareness that biomedicine often does not provide. In essence, participants of these cyberspace communities exercise power by sharing and gaining relevant, practical advice that biomedical experts do not present.

Other forms in which patient activism has been visibly manifested is through self help groups. The sudden increase of self-help groups has become a good indicator of the increasing role and participation of ill patients in health issues. Participants of self-help groups gain the support and encouragement they often can not find with their health care providers. In general these support networks create emotional, financial and informational support, promote research and public awareness, confirm and validate illnesses and provide a space where patients can voice their opinions. Their popularity has increased, and has resulted in greater awareness among sufferers. So, if one of you, is ever diagnosed with Leukemia today, tomorrow you could probably find a Leukemia support group that will positively impact your experience with the illness.

It is also important to recognize that patient activism has made significant impact at the institutional levels of health care and government. For example, California’s Coalition for the Medical Rights of Women (CCMRW), founded in 1974, successfully pressured California’s state government to impose stricter standards for the labeling of drugs and medical devices (Zimmerman, 383). Furthermore, the resilient efforts of women’s political action organizations led to the establishment of the National Women’s Health Network (NWHN), which today “closely monitors Congress and government agencies [and] functions primarily as an information clearinghouse” at Washington DC (Zimmerman, 390). In the AIDS arena, many AIDS activists now work as “representatives to FDA [Federal Drug Administration] advisory committees charged with evaluating new drugs” (Epstein, 616). The direct involvement of activists in federal institutions, are affecting the outcome of new drugs and treatments being proposed.

The strong efforts made by AIDS activists, to push for effective, unbiased AIDS research, led to the unprecedented cooperation of patients, advocates and clinical investigators (Epstein, 616)). This was an important feat because it led to the increased accessibility of drugs still in the experimental phase, according to the FDA. Although they experienced resistance from biomedical researchers, the New England Journal of Medicine published an article stating that ineffective trials should be stopped, and that current research should be done in a manner that facilitated subject adherence (Epstein 616). The efforts led to what is referred as a “parallel track,” which helped keep clinical trials pure by providing another outlet for patients wanting drugs. This “parallel track,” pushed to allow the pharmaceutical industry to provide free medications that are still on research trials.

The activism which the WHM and AIDS activism created in the biomedical field imminently affected the doctor-patient relationship. Patients have assumed a more active role in the treatment and progression of their illnesses. In using Szasz’s three models of doctor-patient relationships[1], I would argue that the traditional guidance-cooperation relationship model which formerly characterized most doctor-patient interaction, is now shifting to the mutual participation relationship. Regardless of race, gender or economic status, patient activism has shifted the relational power towards the patient. 

For this important reason, providers need to acknowledge and empathize with the so called “lay experts” of certain illnesses, who posses valuable insight as to the progression of particular disorders. Even though, activism may be seen as a threat to medical authority and autonomy, physicians should respond to these changes with respect and sensitivity because patients have rights, and a choice to become involved in the treatment of their illness.

-Michael garcia

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