on bridging the gap

2
Commentary Academic Psychiatry, 27:1, Spring 2003 29 On Bridging the Gap Lauren T. Bonner, M.D. Dr. Bonner is affiliated with the Department of Veterans Affairs’ Northwest Network Mental Illness Research, Education and Clinical Center (MIRECC) and the University of Washington Department of Psychiatry and Behavioral Sciences, Seattle, WA. Address correspondence to Dr. Bonner, VA Puget SoundHealth Care System, S-116 MIRECC, 1660 S. Columbian Way, Seattle, WA 98108. E-mail: [email protected] T he authors of “Bridging the Gap” (1) address a critically important topic: the recruitment of African-American women as mental health research subjects. It is well known that although African Americans represent 12% of the U.S. population (2), their representation as subjects in medical research is negligible (3). This disparity not only results in a dearth of data on African Americans and other ethnic communities, but may result in inappropriate gen- eralization of clinical practice data generated from other ethnic groups. Use of such data in an evidence- based practice model may not provide maximum benefit to these unique patient populations. There are numerous explanations for the under- representation of African-American women in medi- cal research protocols. They include deficiencies in re- cruitment strategies and in study and protocol design, as well as the attributes of the community itself, including the low priority given to participa- tion in research, concerns about the methods used in previous research protocols, and distrust of the re- searchers’ motives (3). I think the origin of the distrust of the African- American community toward the idea of research de- serves further explanation in the context of this arti- cle. Unfortunately, the authors, as well as others before them, have oversimplified the causes of dis- trust of the scientific community by African Ameri- cans by sole attribution to the Tuskegee study (4). In this now infamous study, African-American men with syphilis were allowed to remain untreated as part of public health research documenting the effects of the disease. Just a brief mention of the effects of slavery, Jim Crow, segregation, and the continuing impact of racism would have demonstrated a more sophisticated understanding of the history of the re- lationship between the African-American community and the medical research establishment (4). The au- thors also make a vague reference to the fear of “[s]ome African Americans . . . that their race are used as ‘guinea pigs’ in medical research.” As re- viewed by Gamble (5), this fear is a well-documented fact. It is well known that slaves were used as exper- imental subjects by a number of famous physicians, including the father of modern gynecology, Dr. J. Marion Sims (5). In addition, the involuntary sterili- zations of African-American women in federally funded health care clinics in the 1960s and 1970s have left a legacy of distrust and fear in the African- American community (6). To academic mental health professionals, this in- formation may not be new. A number of legal and policy changes including the formation of the Na- tional Center on Minority Health and Disparities in 1993 and the NIH Revitalization Act of 1994 have at- tempted to address the issue of the lack of partici- pation of minorities and women in clinical trials. However, what is new is the increasing recognition and acceptance of the active role we must take in ac- knowledging the heinous abuses of the past and in developing appropriate research protocols aimed at addressing this lack of representation. As demon- strated by the authors of this paper, we must shoulder more of the burden of responsibility for the devel- opment of academic–community partnerships within the ethnic communities we serve. In a simple and ideal world, these academic– community partnerships would result in a collabo- rative effort in the design of research protocols that appropriately reflect the concerns and interests of the communities and improve our clinical base of knowl- edge. In reality, the implementation of appropriate interventions to significantly increase the represen- tation of women and ethnic minorities in mental health research is difficult and complex. Although

Upload: l-t

Post on 23-Dec-2016

212 views

Category:

Documents


0 download

TRANSCRIPT

Page 1: On Bridging the Gap

Commentary

Academic Psychiatry, 27:1, Spring 2003 29

On Bridging the Gap

Lauren T. Bonner, M.D.

Dr. Bonner is affiliated with the Department of VeteransAffairs’ Northwest Network Mental Illness Research, Educationand Clinical Center (MIRECC) and the University of WashingtonDepartment of Psychiatry and Behavioral Sciences, Seattle, WA.Address correspondence to Dr. Bonner, VA Puget Sound HealthCare System, S-116 MIRECC, 1660 S. Columbian Way, Seattle,WA 98108. E-mail: [email protected]

The authors of “Bridging the Gap” (1) address acritically important topic: the recruitment of

African-American women as mental health researchsubjects. It is well known that although AfricanAmericans represent 12% of the U.S. population (2),their representation as subjects in medical research isnegligible (3). This disparity not only results in adearth of data on African Americans and other ethniccommunities, but may result in inappropriate gen-eralization of clinical practice data generated fromother ethnic groups. Use of such data in an evidence-based practice model may not provide maximumbenefit to these unique patient populations.

There are numerous explanations for the under-representation of African-American women in medi-cal research protocols. They include deficiencies in re-cruitment strategies and in study and protocoldesign, as well as the attributes of the communityitself, including the low priority given to participa-tion in research, concerns about the methods used inprevious research protocols, and distrust of the re-searchers’ motives (3).

I think the origin of the distrust of the African-American community toward the idea of research de-serves further explanation in the context of this arti-cle. Unfortunately, the authors, as well as othersbefore them, have oversimplified the causes of dis-trust of the scientific community by African Ameri-cans by sole attribution to the Tuskegee study (4). Inthis now infamous study, African-American menwith syphilis were allowed to remain untreated aspart of public health research documenting the effectsof the disease. Just a brief mention of the effects ofslavery, Jim Crow, segregation, and the continuingimpact of racism would have demonstrated a moresophisticated understanding of the history of the re-lationship between the African-American communityand the medical research establishment (4). The au-thors also make a vague reference to the fear of“[s]ome African Americans . . . that their race areused as ‘guinea pigs’ in medical research.” As re-

viewed by Gamble (5), this fear is a well-documentedfact. It is well known that slaves were used as exper-imental subjects by a number of famous physicians,including the father of modern gynecology, Dr. J.Marion Sims (5). In addition, the involuntary sterili-zations of African-American women in federallyfunded health care clinics in the 1960s and 1970shave left a legacy of distrust and fear in the African-American community (6).

To academic mental health professionals, this in-formation may not be new. A number of legal andpolicy changes including the formation of the Na-tional Center on Minority Health and Disparities in1993 and the NIH Revitalization Act of 1994 have at-tempted to address the issue of the lack of partici-pation of minorities and women in clinical trials.However, what is new is the increasing recognitionand acceptance of the active role we must take in ac-knowledging the heinous abuses of the past and indeveloping appropriate research protocols aimed ataddressing this lack of representation. As demon-strated by the authors of this paper, we must shouldermore of the burden of responsibility for the devel-opment of academic–community partnerships withinthe ethnic communities we serve.

In a simple and ideal world, these academic–community partnerships would result in a collabo-rative effort in the design of research protocols thatappropriately reflect the concerns and interests of thecommunities and improve our clinical base of knowl-edge. In reality, the implementation of appropriateinterventions to significantly increase the represen-tation of women and ethnic minorities in mentalhealth research is difficult and complex. Although

Page 2: On Bridging the Gap

COMMENTARY

30 Academic Psychiatry, 27:1, Spring 2003

many of the ideas and concepts presented by the au-thors are not unique, this example of a successful col-laborative academic–community partnership pro-vides proof that such a partnership can be mutuallybeneficial. “Bridging the Gap” contributes valuableadditional information to our fund of knowledge aboutthe methods needed to connect with the African-American community.

As a female, African-American, academic geri-

atric psychiatrist who is an invested member of theworld of academic research and of the African-American community, it is my hope and vision thatall of my colleagues will develop an increasing un-derstanding and appreciation of the critical impor-tance of the need to invite everyone to the table.

Supported by the Department of Veterans Affairs andNIH Grant R01 AG18644.

References

1. Meinert JA, Blehar MC, Peindl KS, et al: Bridging the gap:recruitment of African-American women into mental healthresearch studies. Acad Psychiatry 2003; 27:21–28

2. US Bureau of the Census, 20013. Shavers-Hornaday VL: Why are African Americans under-

represented in medical research studies? Impediments toparticipation. Ethn Health 1997; 2:31–45

4. Jones J: Bad Blood: The Tuskegee Syphilis Experiment. NewYork, Macmillan, 1993

5. Gamble VN: Under the shadow of Tuskegee: African Amer-icans and health care. Am J Public Health 1997; 87:1773–1778

6. Dula A: African American suspicion of the healthcare systemis justified. Camb Q Healthc Ethics 1994; 3:347–357