Using community-based participatory research in patient-centered outcomes research to address health disparities in under-represented communities

A community in CBPR may be individuals sharing similar beliefs and values, sharing similar cultures, living in the same geographic location or living with a particular disease [1]. A community in CBPR could also be an organization representing a core constituency or population. In PCOR a community is often defined by how patients, caregivers and other stakeholders organize around common interests. Within PCOR the definition of a community focuses on patients, caregivers and clinicians. For example, transgender individuals represent a community and a subgroup in CBPR, but not in PCOR. For this to be considered a community in PCOR, it must have a medical component, such as transgender people living with diabetes. Establishing the community as a unit of identity gives a more holistic view of patients’ identity and can enhance PCOR efforts.

Pre-engagement is built into the core principles of CBPR, and it entails spending time with potential research participants and community partners before engaging them in the research process [10]. This allows the researcher to understand the community context in which people live, the opportunities that exist within the community, and the barriers that may impede research participation. When a researcher enters a community for the first time and begins by identifying and building on the strengths that already exist, then community members are more open to partnering with such a researcher and are willing to accept whatever changes come as a result of the research. Furthermore, Geographic Information System technology can be used to map already existing community assets [2]. Pre-engagement of community members may be time consuming and resource intensive, but it is a critical first step to effectively engaging community partners, which also enhances the potential for sustainability. Applying this principle will enhance PCOR efforts by making research more efficient and effective.

CBPR recognizes the importance of addressing power differentials so that all stakeholders equitably participate and lend their voice in setting the research agenda [1]. To ensure power is distributed equitably, it is important to establish a process for decision-making at the beginning of the partnership [2]. This is necessary since community partners and academic partners usually do not have the same skill set or access to similar resources. Sharing of grant funds between the community and academic partner also empowers the community to know that their contribution is valued and respected [2]. Traditional structures that have been set up in the conduct of research, such as using the hospital or university as a research site or recruiting participants from university clinics as one of our community partners observed, “it is important to always remember that the door must swing both ways in a PCOR partnership” [10]. The academic institution should not always be used as the research site, where community members must always come, because “those doors are sometimes not viewed favorably by the community, especially among minorities and the underserved”. The researcher should periodically go into the community to recruit and conduct research as a way of sharing power with the community.

CBPR has been a forerunner in breaking these traditional research stereotypes by conducting research in communities where people live and interact such as churches, grocery stores, barber shops, beauty shops, public libraries, recreation centers and parks [6,10]. As PCOR continues to evolve, lessons learned from CBPR can be applied, such as ongoing training and adequately preparing all stakeholders to contribute and feel valued. In order to create equal partnerships in a PCOR study, it is important to clearly define the roles each stakeholder will play, and to develop clear guidelines from the beginning [1]. The creation of these equal partnerships can enhance PCOR by ensuring that research is more transparent. This shows genuine partnership.

As the best practices for patient engagement in PCOR continue to evolve [8], some of the established best practices used in CBPR, such as the bidirectional transmission of knowledge and capacity building of stakeholders, can be applied directly to PCOR [13]. PCOR is enhanced when researchers draw on the knowledge and expertise of community partners in learning about local customs and cultural ways of knowing that inform health, while the community partners can learn valuable research skills from researchers.

CBPR has a broader goal of integrating knowledge gained through research into evidence that will lead to social change, a system change and the transformation of communities [1]. The evidence gathered from both CBPR and PCOR is used to improve health outcomes [6]. However, the process by which this occurs is what slightly differs. While CBPR uses evidence gathered to inform ‘action and social change’ within communities, PCOR uses the evidence to assist patients, caregivers, payers, policy-makers and other stakeholders to make informed health decisions.

Similar to CBPR, PCOR focuses on addressing health topics that are important and locally relevant to communities of diverse patients. CBPR emphasizes the overall health of the community by looking at individual and contextual determinants of health as well as behavioral and lifestyle interventions that can be used to improve the health of the community [6]. PCOR does the same, but with less of a behavioral and lifestyle interventions approach and more of a medical interventions approach [6]. Providing a holistic view of patients (not just a disease-focused view), and recognizing that different factors outside of each individual determine that person's health outcomes can enhance PCOR.

A system in CBPR could represent a partnership, and the process of building and maintaining this partnership involves a cyclical and iterative process [1]. Ideally, developing this kind of system would incorporate the Institute of Medicine's learning healthcare system that would extend beyond a CBPR/PCOR approach to evidence generation for all types of research studies. This cyclical and iterative process enhances PCOR by driving sustainability, trust, and allowing for collaborations to continue after the funding cycle has ended. Given the shorter duration of funding cycles for PCOR studies, it may be difficult to implement a cyclical and iterative process that goes back and forth between the different steps of the research process [6].

CBPR ensures the dissemination of knowledge to all partners using plain, easy to understand language [1]. In particular, CBPR collaboratively involves all community partners in the dissemination process to ensure that only information that will benefit the community is shared in a culturally appropriate manner, and that dissemination is done in the right way [6]. Failure to involve community partners in the dissemination of findings may lead to divulging information that will cause harm and stigmatize a community which will further create a breach of trust. Similarly, in PCOR, participants want to be kept informed of research progress and findings, both good and bad, as they evolve. This goes contrary to traditional study design that dictates sharing of findings at the end of the study through research publications in academic journals that use technical language, which may not always be the most effective strategy for the patient populations that could benefit from the study. This principle can enhance PCOR by exploring other nontraditional innovative strategies for disseminating findings that will be effective with different patient groups.

It takes time and effort to develop a committed and trusted relationship with community partners. In CBPR this relationship is developed and maintained during the study period and extends beyond the study [6]. After the study for which the partnership was established has ended, the commitment to the relationship still remains [1,10]. Researchers and community partners can still collaborate and support each other through ongoing trainings, joint manuscript preparation, co-presentation of research, constant grant writing and sharing of grant funds [2]. Sustainability driven by continuity of the partnership is already built into CBPR processes such that at the beginning of the study there are already discussions on how to sustain the research partnership after funding has ended [1]. With PCOR having a shorter funding cycle than most CBPR studies, PCORI established PCORnet to ensure sustainable partnerships. This infrastructure, together with patient involvement in governance, should help with sustainability. Through its clinical data research networks (CDRNs) and patient-powered research networks (PPRNs), PCORnet allows for collaboration between researchers and patients to develop evidence that gets translated into real-world patient care on a national level and at a faster rate [14]. This principle can enhance PCOR by further helping to maintain trust and reduce health disparities, especially in underserved communities.

Traditional research approaches typically do not engage the patient as a stakeholder in the entire research process, and even more so ensuring sustainability after the funding and research has ended. The challenge of truly and fully engaging patients throughout the research process is time consuming, resource intensive, and requires extra effort, but is necessary to conducting meaningful PCOR and producing useful evidence to both patients and healthcare providers [8]. CBPR promotes collaborative and sustainable community partnerships through the creation of community advisory boards or community research teams. Together with researchers, the advisory board or research teams engage in discussions about sustainability at the beginning of the research, as opposed to towards the end.

A vast majority of CER studies have focused on the selection of comparison groups and outcomes, which sometimes may not be appropriate and meaningful to the broader population of patients with a particular medical condition [8,15]. Using CBPR approaches in PCOR provides an avenue for incorporating the views from diverse patient groups. This is important since there are no comparisons to placebo groups [13]. When working with under-represented and disadvantaged populations, it is especially important to include diverse patient voices to ensure that appropriate comparators and outcomes are selected. Failure to engage under-represented and disadvantaged populations in the selection of comparators and outcomes may result in: researchers not including the appropriate comparison groups so that differences in treatment effects cannot be objectively evaluated; and researchers selecting outcomes that may be useless to the patients [8,13,15].

The language and technical jargon often used in informed consent and other institutional review board (IRB) documents can serve as a barrier to engaging under-represented groups in research [8,10,13,15,16]. At times, researchers may find it difficult to translate the language used in these documents in a culturally acceptable way, without losing its meaning, to make it easily understandable and engaging to all stakeholders. This is a deficiency on the part of researchers, as use of plain language to explain complex research topics is imperative, but is often not taught to researchers. Lessons learned from CBPR suggest training community members in research ethics, having the participant consent using plain language or appropriate literacy level ‘in their own words’; culturally matching the individual administering the consent forms to the participant; developing the informed consent document together with the patient/community partners; and allowing participants to take the forms to trusted family or friends [2,10,15].

Some IRB requirements, such as requiring social security numbers even when cash incentives are given to participants, can lead to lack of trust and further hinder the enrollment of underserved groups. The IRB must make adequate provisions to protect the privacy of participants engaged in CBPR and PCOR studies, because ‘of the access healthcare and community-based researchers might have to confidential research information’ about participants within their medical centers or community [16]. Participants may fear that researchers can make the connection by identifying them and linking them to their data. However, in already established trusted partnerships, this barrier is eliminated.

Creating a collaborative working environment takes a lot of time and resources. Furthermore, divergent goals between the researchers and community partners can create tensions in the collaborative working relationship [16]. The different working and communication styles of the stakeholders may cause tension in developing a collaborative working relationship; to resolve some of these tensions it is important to ask about the priorities and goals of the community partners, and what they would like to see come out of the partnership. Furthermore, the creation of an advisory board to engage multiple stakeholders as it is used in CBPR can prove useful in the success of PCOR studies [16].