To promote ethical and genuine patient engagement in PCTs, there are several key principles to consider:

Reciprocal Relationships

Genuine insight is captured when partners feel valued as equal and vital to the research process. A reciprocal relationship is a situation in which mutual efforts and benefits exist.

The principle is demonstrated when the roles and decision-making authority of all research partners, including the patient and other stakeholder partners, are defined collaboratively and clearly stated. (PCORI 2014)

Effective Communication

Clear, regular communication with patients promotes respect, trust, and relationship building. Using accessible language allows those who are not routinely engaged in the clinical research process to meaningfully participate and contribute to the research. Information on effectively disseminating PCT results to patients can be found in the "Dissemination to Patients" chapter. The NIH has also created a Checklist for Communicating Science and Health Research to the Public. Ways to communicate with patients include patient advocacy groups, government and study-specific websites, newsletters, emails, social media, news media, and other widely accessible platforms.

Co-Learning

A sense of openness and desire to educate and be educated by the patient partner should exist.

This principle is demonstrated when the goal is not to turn patients or other stakeholder partners into researchers, but to help them understand the research process; likewise the research team will learn about patient-centeredness and patient/other stakeholder engagement, and will incorporate patient and other stakeholder partners into the research process. (PCORI 2014).

Compensation

According to PCORI, when determining financial compensation for patient partners, consider the expertise, commitment, responsibility, type of work involved, and degree of participation. Fair compensation should encompass more than reimbursement for the expense or time that the patient partner incurs to participate in the patient engagement activity. While compensation will vary among research projects, the Table shows a model for how reasonable compensation can correspond to engagement activity levels (PCORI 2015).

Table. Sample Model for Fair Compensation of Patient Partners

Adapted from PCORI (2015).

PCTs often engage patient partners across multiple health systems. Differences between health systems in their regulations and mechanisms for paying patient partners can cause delays and barriers. Research teams should understand payment options and processes before making promises to patient partners. Prioritizing fair and timely payment for patient partners is respectful and promotes trust with each patient partner and their community.

Cultural Humility

“Cultural humility is a process of self-reflection and discovery in order to build honest and trustworthy relationships” (Yeager et al 2019). Complete cultural competency is not possible for individuals who do not belong to the specific group or identity, so humility should be at the center of all patient interactions and communications. The research team should express this humble awareness from the beginning of engaging with patient partners, and carry the theme of cultural humility throughout the relationship. In addition, patient partners who communicate in a language other than the PCT’s primary language will provide valuable insight and experience.