In addition to its value, some argue there is an ethical obligation to engage patient partners in PCTs (Solomon et al 2016; Thompson et al 2009). Active patient participation and authentic respect can also promote patient-centered care (Epstein 2011). However, if done in a careless or tokenistic manner, poorly conducted patient engagement can violate ethical principles and potentially cause harm.

Health care benefits cannot be justly distributed, nor can the burdens and benefits of research participation be fairly shared, unless patients and the public are engaged in the production of new knowledge and in making decisions about its value, use, and distribution. (Solomon et al 2016)

Ethical Basis for Patient Engagement

Patient engagement has the potential to advance several ethical goals, including enhanced protection, enhanced benefit, legitimacy, and shared responsibility (Table 1; Dickert et al 2005; Smalley et al 2015). In PCTs in which the lines between routine care and research may be near invisible to participants and ethical models are not always clearly established, seeking patient input on ethical study design and practices can help ensure decisions about the trial reflect the interests of patients (Anderson et al 2015).

Patient engagement for the purpose of improving research is consistent with the ethical principle of beneficence because it can help maximize benefits to patients. Seeking input from patient partners, listening to them, and designing the research to be more reflective of patient needs shows respect.

Table 1. Ethical Goals of Patient Engagement

Republished with permission. Source: Dickert N, Sugarman J. 2005. Ethical goals of community consultation in research. Am J Public Health. 95(7):1123-7.

Promoting Ethical Patient Partner Engagement

When patient engagement is not carried out in an ethical way, it can damage relationships, diminish respect, and degrade trust. Engaging patient partners in an ethical manner requires establishing clear ethical standards for patient engagement and training researchers (Bélisle-Pipon 2018).

There is an ethical obligation to clearly communicate and disseminate research information to collateral participants, which includes patient partners. The concept builds on existing literature that highlights the ethical obligation to consult and diverse and representative communities (Smalley 2015).

Table 2 provides an example scenario encountered during patient engagement activities with an associated ethical approach, unethical approach, and the relevant ethical principles.

Tips for promoting ethical patient partner engagement in PCTs include:

• Establish respect as a core principle for relationships with patient partners
• Develop shared visions with patient partners and outline accurate expectations for patient engagement activities and process (Montreuil 2019)
• Identify the rationale underlying patient engagement, make it explicit, and ensure it is understood by all parties
• Provide training for the research team on relevant ethical guidelines before engaging with patient partners
• Select patient partners who aim to represent patient participants in the research
• Seek to engage a diverse group of patient partners who are representative of the broader population affected by the research (Ellis et al 2017)
• Commit to compensating patient partners fairly and quickly
• Follow up with patient partners in a timely manner to inform them of outcomes of their insights (Montreuil 2019)
• Acknowledge patient partners in research publications through authorship or other means
• Respect and protect patient partner confidentiality and privacy
• Be mindful of power dynamics, privileges, and inequities that may differentially affect patient partners compared to researchers or other partners with regard to decision-making
• Be considerate and respectful of patient partner time, circumstances, and accommodations

Table 2. Examples of Applying Ethical Principles to Patient Engagement

Avoiding Tokenistic Engagement

Tokenistic engagement or the perception of such by patients conflicts with ethical principles, specifically respect and trust. “Tokenism is defined as the practice of making perfunctory or symbolic efforts to engage communities or patients” (Hahn 2017).

The research team should possess and communicate their authentic desire to engage patients because of patients’ valuable perspectives and critical insights. Tokenistic patient engagement can have negative and long-term repercussions among patient populations, especially among those historically under- or misrepresented (Duffet 2017).

Table 2 above describes characteristics of genuine versus tokenistic engagement.

Relationship-building with partners helps to combat tokenism, and this takes time. As researchers work to establish trust, early genuine attempts at engagement may superficially resemble tokenism. Researchers can use the tips shared earlier in this section to help promote ethical engagement while continuing to build relationships with patient partners (Hahn 2017).