How to improve and retain the participation of minorities in clinical trials – lessons learned from the Maryland Regional Community Network Program

Doctor_with_patientChallenges in recruiting patients from minorities

Successfully recruiting ethnic minorities into clinical trials is a major challenge for healthcare professionals. There are obvious benefits to the individual and their community, and to the integrity of scientific research through the diversity of people included in clinical trials. Many factors affect enrolment into clinical trials such as race, socioeconomic status, access to healthcare, and cultural beliefs (Baquet), limited access to information on available trials by the general public, and a lack of understanding and knowledge of the role of clinical research in the development of interventional treatment (Shavers-Hornday et al., and Harris et al.). This coupled with existing attitudes toward research, including mistrust of researchers or research institutions; perpetuate existing fear influence participation off African American patients in the US. Similar reasons also hold true in Eastern Europe, especially in those countries with history of conflict between state and the people.

Engaging physicians from minorities

Important lessons can be learned from community outreach programmes such as those from the Maryland Regional Community Network (MRCN) for Eastern Europe, because they have been very effective in engaging members from all backgrounds of a community (Baquet et al). According to the Food and Drug Agency (FDA), minority patients seek physicians of their own race, so bringing these doctors into trials is critical. In the US, organisations such as the National Clinical Trials Network, National Minority AIDS Council, Project IMPACT (Increase Minority Participation and Awareness of Clinical Trials, initiated by the National Medical Association), and the National Hispanic Research Network seek to bring in physicians from all racial backgrounds to help increase patience awareness and participation in their communities.

An education plan

Underserved communities often suffer from a lack of health awareness and disease education. This leads to those communities often not recognising signs and symptoms of disease, importance of seeking and continuing with treatment, or the possibility for clinical trial enrolment (FDA). Armed with such powerful knowledge, minorities will more readily be proactive in terms of treatment and be more open to becoming involved in clinical trials. Project IMPACT has helped educate both patients and physicians to help this work effectively. Patients have been taught about their right to quality healthcare and sufficient information to decide on their treatment. Physicians have been taught to be aware of clinical trials, demography and demography-based diseases and symptoms.

Engaging communities

Healthcare professionals involved in the MRCN have successfully tackled the problems of serving individuals from minority and low socioeconomic backgrounds (Baquet et al). They have achieved this by speaking to community leaders and going into the community via local businesses, events and places of worship for example, and by using various marketing methods to help get the message across. Together with involving more professionals from minorities to help conduct the trials, more confidence has been bred into all levels of the healthcare system and resulted in increased patient participation (Baquet et al).

Modern communication methods

Engaging with and educating people via a multi-channel approach has proven very successful. Social media including Facebook, Twitter and YouTube, coupled with traditional forms of communication such as word of mouth, advertisements, and relationships throughout communities, has been very powerful. Clear communication together with the building of relationships is key for successful recruitment into clinical trials and the success of clinical trials in Eastern Europe.

References:

Shavers-Hornaday VL, Lynch CF, Burmeister LF, Torner JC. Why are African Americans under-represented in medical research studies? Impediments to participation. Ethn Health. 1997;2(1-2):31–45.

Baquet CR. The Role of State Legislation and Policy in Addressing Disparities in Clinical Trials. Eliminating Disparities in Clinical Trials (EDICT). http://www.bcm.edu/edict/PDF/State_Legislation.pdf

Baquet C.R., Henderson K., Commiskey P., Morrow J.N. Clinical Trials: The Art of Enrollment. 2008. Seminars in Oncology Nursing, 24 (4) , pp. 262-269.

Harris Y, Gorelick PB, Samuels P, Bempong I. Why African Americans may not be participating in clinical trials. J Natl Med Assoc. 1996;88(10):630–4.

FDA: http://www.fda.gov/downloads/ScienceResearch/SpecialTopics/WomensHealthResearch/UCM334959.pdf

This entry was posted in Central and Eastern Europe, Patient Enrolment, Social Media. Bookmark the permalink.

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