ethnic minorities include type 2 diabetes, cardiovascular disease, stroke, infectious diseases (HIV/AIDS, sexually transmitted diseases [STDs]), and different types of cancer (colon, prostate, cervix, lung).
For example, African Americans and Hispanics represent 12{fe5962ec0fb295614bb6182f4fde947ad2c11919a94d76609308b98cde13db82} of the U.S. population, respectively, but only 5{fe5962ec0fb295614bb6182f4fde947ad2c11919a94d76609308b98cde13db82} of clinical trial participants (P. Sanders, meeting presentation)
Hispanic population, which represent only 1{fe5962ec0fb295614bb6182f4fde947ad2c11919a94d76609308b98cde13db82} of trial participants but 16{fe5962ec0fb295614bb6182f4fde947ad2c11919a94d76609308b98cde13db82} of Americans (J. Tierney, meeting presentation).
The Coalition to Eliminate Disparities and to Research Inclusion in Clinical Trials (CEDRICT) identified minority lack of disease education as a major barrier to recruitment.
investigators and coordinators, are insurance status, patient inconvenience costs, availability of transportation, distance to the study site, and patient and family concerns about risk
Diversity is not a natural priority for industry, where decisions often are made by market attractiveness and potential for profit.
Sex differences are observed in response to many drugs.3 Females have a 1.5–1.7-fold greater risk of developing an adverse drug reaction, and several drugs have been withdrawn from the market over the last two decades because of sex-based adverse events
Research has shown that minority patients seek physicians of their own race, so bringing these doctors into trials is critical.
The National Bioethics Research Initiative, Building Trust Between Minorities and Researchers, is working to assess the experiences and attitudes of African Americans and Hispanics toward medical research. Build trust
Sponsors must demonstrate the importance of the trial and the potential benefits for the patient and his or her community.
his is particularly critical in the American Indian and Alaska Native (AI/AN) communities, who often have cultural traditions or religious beliefs that conflict with modern research methods.
(1) recognize the signs and symptoms of disease, (2) recognize the importance of treatment, (3) readily seek or comply with treatment, and (4) know or understand their treatment options or the possibility for clinical trial enrollment.
Patients must be empowered to demand quality healthcare and have all the information needed to make their own decisions about their treatment.
Physicians need to be edu
One particularly successful means for building trust, educating patients, and raising awareness is through community-based participatory research (CBPR).
eliciting the support of trusted community leaders.
A number of studies targeted African American participants through black churches, barbeques, community events, barbershops, and beauty salons.
Sponsors can use this information to carefully select trial sites based on geographic distribution of ethnic/racial minority patients and physicians, keeping in mind the prevalence of the disease in that region.
Current ethical standards for informing patients and gaining consent are not adequate in communities with limited English proficiency or that have cultural traditions that conflict with certain scientific methods.
data are to be used effectively in analysis of the effects of race/ethnicity or sex/gender on clinical outcomes
data standards across research bodies, industry, and regulatory agencies will increase speed and efficiency and facilitate data interpretation across platforms.
web-based direct-to-participant (D2P) venues to revolutionize clinical trial research
Giving patients access to trials within the convenience of their own homes reduces overhead costs and eliminates geographical barriers, transportation costs, and scheduling difficulties.
The National Clinical Trials Network Database of disease maps and physician information will help sponsors to advertise their trial, locate investigators, and pinpoint locations for trial sites in order to target populations most affected by the disease.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3432572/
sper the same report, ~$400,000,000 of venture capital went into healthcare analytics last year and the current healthcare analytics market is reported to be ~$4 to $5 Billion (predicted to grow at 8{fe5962ec0fb295614bb6182f4fde947ad2c11919a94d76609308b98cde13db82}-11{fe5962ec0fb295614bb6182f4fde947ad2c11919a94d76609308b98cde13db82} till 2020).
simply telling you to “take a left turn” based on a complex set of variables that are computed on the backend in google maps or waze.
https://analyticsmd.files.wordpress.com/2015/09/screen-shot-2015-09-24-at-2-48-58-pm.png?w=415&h=410https://analyticsmd.files.wordpress.com/2015/09/screen-shot-2015-09-24-at-2-48-58-pm.png
analyticsmd.com
Use Akido to easily integrate your software with any hospital health record system (EHR) and securely get access to health data.
medical providers have the greatest impact and responsibility in educating the public about clinical trials. But while two-thirds of Americans in a survey responded that they would participate in a clinical trial if their doctor recommended it, only 32 percent of Americans have had such a conversation with their physicians.
Clinical Trial Engagement Network, which provides a secure, Internet-based environment connecting patients, clinical trial sponsors, clinical investigators, health care professionals, their institutions, and advocacy organizations across the nation. Through the network, authorized clinical trial sponsors can easily identify potential clinical trial participants who meet specific study requirements.
National Clinical Trial Network. The network is an online portal designed to link communities of patients, practicing physicians, and researchers, reasoning that greater connectedness will draw more African-Americans and Hispanics to clinical-trial research teams.
They’re really built around temporary networks that are created to recruit a specific number of patients into a specific trial. And when the trial is completed, the network comes down.”
egistries of investigators and patients, plus community-level health statistics, to help investigators pinpoint minority populations that share a medical need and, when appropriate, facilitate their recruitment into clinical trials quickly and cost-efficiently.
Similarly, retail pharmacies, PBM mail-order pharmacies, and pharmacy claims managers have created an infrastructure to present formulary rules and medication histories when prescription drugs are ordered through e-prescribing systems,
real-time prescription drug history and provide patients and clinicians with more efficient ways of ensuring adherence to medications. If both pharmacists and physicians were provided with alerts for needed refills, health care professionals—and not third-party case managers—could receive incentives to ensure that patients refilled their prescriptions,
advertising challenge // sensitive data // patient sign up
Social support is assumed to be positive, but my qualitative research demonstrates that it is complicated for Latino and Asian Americans who negotiate collectivist norms and practices emphasizing close social bonds. Collectivism paradoxically may decrease the use of social support in Asian and Latino cultures. When considering sharing their problems, Asian and Latino Americans appear to place different emphases on relationship priorities, with the former most concerned about losing face, and the latter worried about maintaining group harmony and making matters worse. These findings suggest that cultural norms related to social connections and help-seeking are nuanced.
In health care, social connections may be leveraged as access points for care, but intervention and outreach efforts must be culturally tailored to the needs and norms of Latino and Asian Americans.
Because culture is complex, we need to embrace multidisciplinary perspectives (e.g., psychology and public health), and multiple methods that illuminate how cultural norms affect help-seeking for mental health problems.
Asian collectivist cultural norms that discourage disclosure of negative thoughts and feelings. Asian and Latino Americans may be reluctant to rely on family and friends for support, because they are concerned about how self-disclosure undermines their relationships and jeopardizes their social reputation.
