For a variety of reasons, peer support organizations often experience challenges in demonstrating the value of their programs and services using available mainstream clinical data sources. The mere act of trying to collect information and data from clients might be perceived as invasive and thus detrimental to the peer support model. A lack of resources, too, can make data collection difficult for these organizations.
In spite of the challenges, however, there are opportunities for peer support organizations to show value and provide key lessons to the rest of the mental health and addictions sector in the development of a person-centered approach to care.
I had the opportunity to explore this further with Deborrah Sherman, Executive Director of the Ontario Peer Development Initiative (OPDI), and Theresa Claxton, Chair of the Ontario Association of Patient Councils (OAPC).
OPDI consists of peer support organizations and consumer/survivor initiatives (CSIs) across the province. It works to bring the perspective of these organizations to provincial planning processes, research projects, and systemic advocacy issues.1
OAPC is an association of patient councils within Ontario hospitals. Patient councils comprise individuals that provide advice to hospitals on improvements to service from a patient and family perspective. Patient councils support both in- and out-patients in their care journey, and perform other various roles that support hospital functions (e.g. staff training, developing materials, and re-designing projects with the patient in mind)2. Some patient councils are peer-led by current and former patients, while others by the hospital.
What follows are observations from Sherman and Claxton about peer support and data.
Principles of peer support
Peer support in the mental health and addictions sector is available to individuals that want to receive support from someone who has shared the same or similar experience as themselves. These services and programs are vast and varied, but can include support groups, one-on-one support, in-hospital visits and appointment accompaniment, employment support and family support programs.
Common values of peer support organizations include: hope and recovery; self-determination; empathetic and equal relationships; dignity, respect and social inclusion; integrity, authenticity and trust; health and wellness; and lifelong learning and personal growth.3
Peer support is based on the unique needs and experiences of the individual, or peer, receiving support. Peer support workers provide emotional and social support using a recovery-based, holistic framework provided in health care and community settings, workplaces and other environments.
Accessing peer support does not require a clinical diagnosis and support workers focus on the future of an individual rather than past experiences with services and programs.
Sherman and Claxton conveyed that the open, non-judgmental nature of peer support services leads to increased trust for individuals that are often socially isolated or have lost trust in mainstream services.
Peer support values privacy
Receiving peer support often means that personal health information is not requested or required, a privacy valued by many. Peers often prefer to remain anonymous or would like to be treated as individuals on equal footing as peer support workers. This approach differs from the traditional client-provider relationship that exists in mainstream mental health and addictions services.
In fact, if information is collected, peers might be deterred from accessing the services, or it may limit the trust they have in their peer support worker. Also, how the data is used, the security of information and its value is not always clear for peers, and requesting such information may impact negatively on relationship building.
From the perspective of the peer support workers, collecting data is also perceived as taking away valuable support time from peers in need. And at an organizational level, peer support organizations and CSIs often lack resources, both in terms of staff time and information technology infrastructure required to collect and use data.
Even the title of tools can be contradictory to the nature of peer support work, as many organizations do not consider themselves to be ‘care’ providers.
More frustrating is that mainstream data collection tools, which do not fit the tenets of the peer support model, are often mandated for these organizations if they are receiving health care dollars.
“For example, even the title of tools, like the Ontario Perception of Care, is contradictory to the nature of peer support work as many organizations do not use the language nor consider themselves to be ‘care’ providers,” Sherman says.
In spite of the challenge, peer support organization and CSIs are realizing the importance of demonstrating their value because of increased pressure from funders to prove health outcomes, Claxton says.
But she says that new tools for assessment and screening often do not work.
“Peer support organizations need to collect information that will compare similar support programs and services to each other, (meaning) one peer support organization to another,” Sherman says. “It is not appropriate to be using the same tools and measures as other mainstream mental health and addictions services that do not operate with our principles, programs and services.”
Though there are significant barriers to collecting and using data, it’s evident that peer support is a viable service option within the mental health and addictions sector.
For example, individuals relying on mainstream services might find that peer support offers a new and valuable way for them to establish relationships and address their mental health differently.
The availability of peer support programs ensures that people – some who may have a level of distrust with mental health and addictions system as a whole – have a place to go if frustrated or if they’ve not had their needs met by mainstream care.
Peer support and data: next steps
OPDI and OAPC are currently examining, via survey, the data collection landscape of peer support organizations in Ontario. One potential method to demonstrate the value of these organizations in the system is by measuring the partnerships they have in the communities where they operate.
A strength of peer support is the ability to work with other organizations and link peers to health and social services, beyond mental health and addictions. These linkages are crucial to meet needs discovered through the relationships formed with peer support workers. In an increasingly integrated health care system, working relationships and existing collaborations need to be identified by system planners to truly understand the value of peer support workers.
Quality improvement is core to peer support
Peer support organizations are continuously checking in with peers to ensure needs are being met, a key in creating a culture of continuous quality improvement. The very nature of peer support is flexible to meet an individual’s needs. That’s why peer support workers facilitate continuous feedback and check-ins with peers to see how they can improve their support functions.
Also, peer support and CSI organizations are often led by democratic boards that reflect the needs of peers. Emphasizing the peer’s needs as a core direction of the organization can help to enhance the service. Patient councils, for example, are consulted in quality improvement practices in hospitals. The councils bring a unique perspective to patient engagement and provide advice on how hospitals can better share information with in- and out-patients. These councils can also provide context and stories behind the data, using their experience to make suggestions for improved patient experience.
In some cases, Claxton says, some peer support organizations have achieved accreditation from Accreditation Canada because they’ve been able to explain the importance of not collecting data from the peers they serve,
“For example, the Krasman Centre received accreditation as they worked to show how empowerment of peers plays a large role in what they do. And where data could not be demonstrated, a clear case was made as to why this was beneficial to peers,” she says.
The principles of peer support do not always allow for data collection and performance measurement, however, the trade off is a trusted and highly-valued relationship with peers and their peer support workers.
The person-centered approach of peer support – constantly ensuring needs are being met – is a key learning that can be applied to the entire mental health and addictions sector as it further adapts a culture of continuous quality improvement. Moving forward, peer support organizations and CSIs will continue to strive to demonstrate their value by staying true to their principles of trust, empowerment, and above all, hope.
Jenna Hitchcox is a Policy Analyst at Canadian Mental Health Association Ontario.
1Ontario Peer Development Initiative. (2014). Welcome to Ontario Peer Development Initiative. Retrieved from: http://www.opdi.org/
2 The Change Foundation. (2014). Patient/Family Advisory Councils in Ontario Hospitals: At Work, In Play, Part 3: Examples: What the Councils Changed. Retrieved from: http://www.changefoundation.ca/patient-family-advisory-councils-report/
3Mental Health Commission of Canada. (2013). Guidelines for the Practice and Training of Peer Support. Retrieved from: http://www.mentalhealthcommission.ca/English/document/18291/peer-support-guidelines