Proposed Ethical Principles for Peer Support Research
| Honoring the dignity of persons: Any relationship between persons must be premised on an understanding and acceptance that all people have an inherent dignity that has been variously codified in international documents. Peer-support relationships must be founded on mutual respect. |
| Selection and training of peer supporters: This will be determined by the setting and may be through an open call for expressions of interest and/or an approach involving a person (eg, a health care professional) who is acquainted with the potential peer supporter. Information governance principles need to be adhered to in this process. The selection process for those with or without given characteristics needs to be transparent, justifiable, and fair. Peer supporters need to be trained in confidentiality. Peers have the right to confidentially refuse a given peer supporter; this may be more or less common with friends, relatives, or neighbors. |
| Professional-Lay boundaries: Standard professions have delineations for boundaries within which relationships may be ethically practiced. While peer supporters are not professionals, support relationships are breeched when there are conflicting roles that compete with the primary goals of peer support. This means that peer supporters need to carefully negotiate the kinds of contacts and activities they enter into with their peers. |
| Simplified informed consent: Implied consent may constitute an appropriate standard in two contexts: intervention and the surrounding research. Agreeing to pair up with a peer or attend a group within an IRB-approved framework should imply consent. Similarly, in certain research activities, an individual’s actions imply consent (eg, completing an IRB-approved questionnaire). More intrusive research activities, however, (eg, measurements, recording of activities, and blood sampling) should require standard consent processes. Medical-record review needs to follow standard information-governance procedures. |
| Documentation of peer relationship and its activities: Formalizing peer relationships will require establishing some basic standards of documentation of the peer relationship and of the activities and outcomes of such a relationship. While documentation in standard professions is elaborate, standards and scope of peer documentation are not well defined. Certain critical cross-cutting issues, such as ensuring completeness and accuracy, confidentiality, avoiding falsifying of records, and truth telling, must be adhered to. |
| Confidentiality and privacy of personal records and information: The freedom to be left alone should extend to all peer support relationships. Patients do not have to document a written release in order to voluntarily share their own personal health information with a peer supporter. They can assume that it will be treated confidentially. They can freely choose whether to have a peer supporter and whether to share any personal health information. |
| Involvement in illegal activities: Parties involved in peer relationships should not abet or foster crime, including involvement with illegal drugs. Helping a peer partner in crime and covering it up is immoral and should be discouraged. |
| Non-licensure to practice medicine: Peer supporters are neither qualified nor licensed to diagnose, give medical advice, or recommend medications. Their interventions involve support that in many aspects aids the implementation of the licensed medical practitioner’s recommendations. |
| Payment/Volunteerism: Any payments made to peer supporters must be carefully considered. A tension exists between the benevolence of volunteers and the capacity for health systems to exploit this benevolence which might undermine evidence-based (but more costly) structures and system changes. If a health system finances peer supporters, the system is obligated to provide adequate training and support for their work. |
IRB = institutional review board