A summary of strategies used by ACCESS OM to implement and sustain SDM principles is presented in Table 1. Implementing effective SDM strategies at all levels of ACCESS OM has not been without challenges, however. In the following sections we outline the main challenges faced, and some strategies to address each challenge.
Time- and Pace-Related Constraints
Challenge It is vital to SDM to invest in creating working environments and relationships where all stakeholders can be heard and empowered.
Time constraints and the associated project pace have been noted as barriers to SDM in clinical settings . These factors have also presented as threats to SDM within the ACCESS OM network. Creating space and investing the time required to maintain professional relationships is a challenge in a pan-Canadian project. Coordination is required to overcome significant geographical distances and multiple time zones in order to ensure that stakeholders’ participation is accessible. Even in the same time zone, operating within standard 9:00 am to 5:00 pm business hours can represent a significant barrier to stakeholder engagement, and consequently to implementing SDM with youth and family patient partners. Family engagement proved at times difficult to maintain across the network, with barriers for involvement stemming from family obligations, work schedules, and the perception of a lack of meaningful engagement.
Recommendations Recommendations include setting reoccurring meeting times well in advance, incorporating quorums and veto power at meetings, and allowing staff members to work flexible hours. Youth specifically requested alternating meeting times between weekday daytime hours and weekends to promote attendance. ACCESS OM network members have demonstrated the willingness to adapt timelines by adopting a consensus decision-making framework into governing bodies.
We also recommend the creation of multi-stakeholder working groups to draft guidelines on SDM values and communication guidelines. For SDM to occur, all members need to agree on timelines and be informed about expectations in order to respect their own self-care and wellness while meeting project deadlines. Respecting a deadline should not trump someone’s wellbeing. Developing trusting collegial relationships creates space for difficult discussions about potentially sensitive topics, like deadlines, support, and wellness.
Power Dynamics and Tokenism
Challenge Despite a commitment to SDM, multiple factors can impede SDM by reinforcing traditional hierarchies and power structures. In the case of ACCESS OM, this challenge was particularly salient early in the project and served as a continued opportunity for reflection and improvement. The ability to understand and implement knowledge can be hindered by hesitation to change practices and develop new policies. Certain practices can hinder engagement and SDM, even when these values are held in high regard by the project. A major challenge and threat to patient involvement in decision making is the administrative structure and prevailing culture in parent institutions where the service or the network administration may be situated. Other examples within the ACCESS OM network include dedicating a limited amount of time and resources to patient engagement, or situating the decision-making process in an intimidating setting (e.g., a room full of researchers who are considered to be experts, alongside one or two patient partners).
Similarly, tokenism is a threat to SDM. Tokenism occurs when patient partners are not given an opportunity to be heard and involved in the decision-making process, and can lead to inauthentic engagement, especially in the context of youth patient partners . Within ACCESS OM, the concept of tokenism has been extended to include the over-representation of one stakeholder voice. Tokenism negatively impacts trust and relationships with the stakeholder population .
Recommendations Shifting power dynamics requires a strong, consistent, and ethical leadership team that adheres to and promotes SDM values and activities. Understanding what and whose knowledge is considered important in the research setting is crucial. All stakeholders need to cooperate and invest significant effort to create change. Investments in training and change management practices need to be made. For instance, a Theory of Change was developed within the ACCESS OM network to inform strategic planning. Staff need to value patient partners’ contributions to SDM practices. Furthermore, additional patient partners must be integrated into teams. Patient partners are needed in various forums to ensure that their voice is heard throughout all processes.
Creating an equitable space for patient partners is an important aspect of SDM in research. Compensating patient partners for their time and unique expertise plays a crucial role in the acknowledgement of this important partnership . In doing so, research projects promote the value of patient expertise, create fairness among those who are doing the same kinds of work, generate opportunities for documenting patient partner contributions, and acquire a better understanding of the level of participation throughout the process . Clear expectations around how patient partners should be compensated must be established from the outset. For example, the AFC Council and the NYC are each allocated an annual budget based on their council’s annual work plan. The AFC Council work plan reflects the council’s mission and objectives for family engagement and family peer support in ACCESS OM. The approved work plans include a structure outlining remuneration for patient partner compensation. Thus, the ACCESS OM network is deliberately engaging patient partners in a meaningful way for sharing their expertise, as well as showing value for the time and effort they dedicate to the project, all of which is consistent with the growing consensus regarding the value of compensating patient partners in health research .
In an effort to counter tokenism, the NYC implemented a nomination process in decision-making situations. Members would nominate a peer, or self-nominate, to determine who would best represent the Council, an approach that led to a peer-driven selection process for representation within ACCESS OM initiatives. Additionally, the NYC and other ACCESS OM governing bodies are intentionally composed of leaders from the local site communities, ensuring that cultural and experiential knowledge is incorporated into research and service design through SDM. This approach has created opportunities for increased membership, and has empowered under-represented voices within the project. While this peer nomination system cannot address the depth of systemic discrimination or under-representation of minority groups, it does increase transparency in decision-making processes, and empowers members to recognize the qualities of their teammates. NYC members purposefully removed application forms or membership criteria to remove barriers and create an accessible membership process for all youth, including youth from under-represented groups. For instance, youth from any community across Canada are welcome to join the NYC so long as they are inspired by the council’s mandate and speak from the perspective of someone with lived experience of mental health. As such, membership to the NYC includes young people from a number of different cultural communities, socio-economic backgrounds, linguistic groups, and members of the LGBTQ2 + community. Peer training on anti-oppressive practices and privilege was offered to NYC members to increase awareness of privilege and oppressive structures. Education, training, and opportunity for advancement is an attempt to increase participation and leadership from all members. Support is provided through remuneration, translation, one-on-one discussion, group discussions, and testimonials about culture, diversity, racism, and other topics that youth would like to address. ACCESS OM experienced a challenge in engaging youth from some rural and northern communities, given that their participation requires reliable access to the Internet. As a result, it was deemed important to host in-person meetings twice a year, where travel and accommodation expenses, as well as remuneration for time, is included in the council’s budget to ensure this meeting’s accessibility to all members. Project directors are invited to this meeting as well to create an opportunity for information sharing.