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Northwestern Medicine African American Transplant Access Program

Through its African American Transplant Access Program, Northwestern seeks to earn the trust of Black patients who need transplant surgery. Each patient meets with a Black physician and social worker throughout the process to explore and address the myths and misconceptions that exacerbate their distrust of the health care system. How does this build trustworthiness? This program builds trust through racial concordance between physicians and patients, the use of lay language, and removing time constraints on the visit; this demonstrates care and increases patients’ comfort with this potentially life-saving process.

How It Works

The African American Transplant Access Program, or AATAP, is a program within the Division of Transplantation at Northwestern Medicine. AATAP is structured based on 4 pillars of intervention: Trust, Cultural Competency, Health Literacy and Diet, and Psychosocial Support. These pillars were created based on the medical literature, as well as feedback from the community and community leaders.

Distrust has been demonstrated to be a major barrier to organ donation and interactions with healthcare in general. Anecdotal evidence from interactions with Black patients, and consensus from community conversations, revealed that interactions with healthcare providers set the tone for trust, and this has also been evident in the literature. Drawing from this literature and from community conversations, a major piece of AATAP’s intervention is to re-earn trust using provider-patient racial concordance and patient-centered communication. The initial clinic visit includes evaluation by a Black physician (Dr. Simpson) and social worker. It is a lengthy initial evaluation visit that centers the patient, uses lay terminology, and is not constrained by time. During these visits, myths and misconceptions about transplantation are explored and debunked, as these are commonly present and exacerbate distrust of the healthcare system. Following the intake visit, there are regular check-ins by both Dr. Simpson and the social worker to answer questions, provide support, and shepherd the patient toward listing and transplantation.

Skills and Competencies

As we are serving the Black community, a major piece of the intervention is provider-patient racial concordance, which has been shown in the literature to have a positive impact on patient experience, relationship with the physician, and trust. In addition, the success of this program relies upon cultural competency, including but not limited to knowledge of common vernacular used, food preferences, and religious beliefs.

Origins

Since the early 1980’s, the medical literature has documented numerous disparities for Black Americans as they have attempted to gain access to the precious resource of a transplant. These disparities include, but are not limited to: lower rates of referral to specialty care (nephrology, hepatology); referrals at advanced stages of disease; lower rates of referral for transplant evaluation; lower likelihood to make it through the evaluation process and be listed; higher likelihood to be delisted once listed; and lower likelihood to actually get transplanted^1-6. Many of these disparities can be tied to structural and institutional racism, and Chicago is a sobering example of zip-code specific inequities that create race-specific barriers to good health, and transplantation specifically.

Under the leadership of transplant surgeon Dr. Dinee Simpson, Illinois’ first Black female transplant surgeon, the Northwestern Medicine African American Transplant Access Program was created to mitigate these disparities for the Black community through a multi-pronged approach, including community engagement to earn trust, patient and provider education, and creative solutions to bridge the psychosocial gaps created by structural and institutional racism.

Effectiveness

We are in the process of evaluating the actual outcome of improved trust in the healthcare system, so cannot offer evidence yet of the intervention in that respect. However, we still have strong reason to believe that the intervention is building trust, both through patient anecdote, and also through the change in evaluation and listing trends within the Division of Transplant at Northwestern. The program was created in 2018 and formally implemented in early 2019. Comparing our evaluations and listings from 2017 to 2019, we saw a 55% increase in evaluations of Black patients, and an 18% increase in listing.

Scalability

Currently, AATAP is implemented in Chicago at Northwestern Medicine only. However, it is certainly scalable, and several conversations are underway to potential create ‘nodes’ of AATAP in Connecticut and Ohio.