Advancing community-engaged research: increasing trustworthiness within community-academic partnerships

The field of clinical research has a long history of egregious acts of atrocities against research participants which raised concerns about trust in researchers and research institutions. Examples of historical research abuses include the US Public Health Service Syphilis Study in Tuskegee, the 1944 Human Radiation Experiments, and ethical misconduct surrounding HeLa cells of Henrietta Lacks. As a result of these blatant breaches of trust, authentic and sustainable community-academic partnerships remain rare, especially partnerships involving marginalized and racial minority communities [2]. Even the notion of trust seems elusive in the literature, where terms such as trust, mistrust, distrust and trustworthiness are used without standardized definitions. While such terms as distrust and mistrust or trust and trustworthiness are used interchangeably, we argue that they are related, yet distinct terms. Trust is noted as one of the foremost facilitating factors in successful collaborative partnerships [2]. Mistrust is the tendency to express a general sense of apprehensiveness or unease toward someone or something. Distrust is also defined as a general sense of apprehensiveness or unease but may be based on a specific experience or piece of information that has personal significance to the individual or community [3,4]. Both mistrust and distrust of research institutions has influenced the willingness to participate in research.

Based on work conducted in organizational psychology, trustworthiness is thought to be an antecedent to trust. Trustworthiness can consist of the following components: ability, benevolence, integrity, fairness, consistency, following through on promises, accountability, justice and value congruence [4]. It is important to note that contrary to some opinions, trust is not always given initially, it may need to be earned, especially among minority groups that have been wronged in the past [5]. Once trust is earned, trustworthiness continues to be built upon. It is strengthened when partners take accountability, responsibility, ownership and acknowledge mistakes made in the past (Figure 1). Moreover, there is an element of time involved such that a longer partnership history can strengthen trustworthiness.

‘’Literature documents several key indicators of a successful partnership such as: open dialogue and communication, collaboration, partnership, benefits, evaluation and sustainability, conflict management, leadership, mutual learning and decision making‘’ [4,6,7,8,9]. There are also instruments or measures that can be used to assess community-academic partnerships such as the Center for Disease Control (CDC) and Prevention Research Center (PRC) Partnership Trust Tool (PTT) [10]. However, to the best of our knowledge, such tools do not specifically evaluate partnerships in terms of trustworthiness and in the context of CEnR.

A true partnership ensures bi-directional learning or shared learning, a sense of equality and commitment among partners, and a transparent understanding of responsibilities [4,6]. There should also be a clear distinction on the time and duration of the relationship.

In order to avoid helicopter research practices, longevity of community-academic research partnerships should involve the development and implementation of a plan for ongoing sustainability as well as sharing research results and study findings. These factors include shared ideas of how to sustain an intervention, access to resources and a clear strategy to implement the plan for sustainability. This also entails commitment from both partners.

Literature on community-based participatory research suggests several key outcomes that are the result of effective sustainable partnerships including policy and practice change, increase in health equity, and intangible benefits such as continued collaboration and sense of camaraderie among both partners. Moreover, we argue that there should be evidence of trust, grounded in ethical principles as a foundation, commitment to ethical conduct, cultural competency training for researchers, training opportunities for community partners and training for researchers to enhance cultural competency.

To advance the field of CEnR, we need to increase community research participation. It is well known that barriers to advancement of participation include distrust and mistrust of academic-research institutions. However, neither trust nor trustworthiness can be achieved until we begin to measure it uniformly across CEnR as the new standard.

Academic research institutions could learn immensely from formally measuring trust between community partners and academic-research institutions. Future directions to improve trustworthiness between community-academic research institutions partnerships could be to develop a survey tool or scorecard to measure key factors of trustworthiness based on items that have been identified in the literature. Results from the survey could be used to strengthen partnerships, increase accountability and may help identify areas for improvement.

Collaboration between community members and academic-research institutions have the ability to increase trust spurring action, development of sustainable partnerships and lasting positive change. It also has the ability to impact better treatments and interventions that are patient centered. Successful community academic-research partnerships rely on participation by community partners; without their trust the foundation in which CEnR is built ceases to be maximally effective [5].

All authors (CD Mullins, S Tanveer, G Graham, CR Baquet) meet the following authorship criteria: substantial contributions to the conception or design of the work; or the acquisition, analysis, or interpretation of data for the work; drafting the work or revising it critically for important intellectual content; final approval of the version to be published; and agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

We acknowledge the support of the University of Maryland, Baltimore, Institute for Clinical & Translational Research (ICTR) and the National Center for Advancing Translational Sciences (NCATS), Clinical Translational Science Award (CTSA) grant number 1UL1TR003098.

The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

No writing assistance was utilized in the production of this manuscript.

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