Case studies
Social Movement Action Framework
Applying grassroots advocacy for girls and women with disabilities and Deaf women
Using collective action, the Disabled Women's Network (DAWN) has advocated for the rights of girls and women with disabilities.
In 1985, 17 women with disabilities across Canada met in Ottawa to form what would become the Disabled Women’s Network (DAWN Canada), one of only a few similar networks globally. These women united in their commitment to creating a national cross-disability organization to advocate for the rights of all women with disabilities and Deaf women through a lens of feminist leadership.
DAWN Canada is a powerful example of an organization built by grassroots efforts and collective action. Its mission targets key areas of shared concern for women with disabilities including discrimination, poverty, unemployment and violence and the promotion of health equity and access to justice. To build support and public visibility, they applied grassroots actions and strategically partnered with other organizations who also advocated for the rights of women and persons with disabilities and the end of systemic marginalization, including labour unions. Researchers and academics joined the effort to promote a feminist disability lens as a standard of practice.
DAWN Canada remains an active and committed disability advocacy organization at all levels:
- at the micro level, they support women and girls with tools to build their self-determination and leadership
- at the community level, they improve programs to support the needs and rights of women and girls with disabilities and Deaf women
- at the macro level, they advocate for policy reform
![Case Study](/sites/default/files/2024-02/CaseStudy_DeafChildren.png)
Strengthening health systems: The experience of the National Health Forum in El Salvador (2009 - 2018)
A nationwide social movement in El Salvador from 2009 to 2018 supported the achievement of the National Health Forum and exemplified goals and outcomes being met by activists. Read more in this case study.
The National Health Forum (NHF), a nationwide popular movement in El Salvador, played a central role in the development of the National Public Health System from 2009 to 2018 (León et al., 2020). It is part of a global movement that aims to build coalitions and networks. The People’s Health Movement (PHM) brought together grassroots health activists, civil society organizations and academic institutions from around the world to address the social, environmental, and economic determinants of health (Kapilashrami et al., 2016).
The NHF provides a strong example of community participation and exemplifies a social movement with fully achieved goals. Formally created in 2010, the NHF had three fundamental goals that were met via social movement actions:
- to build people’s power and strengthen the organizational fabric
- to stand against the idea that previous governments held of privatizing health care
- to stimulate and promote effective social participation in health
The NHF developed three community participation strategies that played a role in strengthening El Salvador’s national public health system. These strategies are: (1) building capacity among local community leaders to become effective decision-makers at all levels of the health-care system, (2) responding to and prioritizing the needs identified by the community for the sector-specific working groups, and (3) advocating for policies based on human rights.
“The NHF was born with high participation of different social movements, all united in the same direction. There were a series of problems, as they wanted to privatize health care […] The NHF was created when the health reform came into being. We, the NHF, are part of the reform” – NHF member
![Peoples Health Movement](/sites/default/files/2024-02/peoples-health-movement.gif)
Advocating for change through the Alzheimer's Association
The Alzheimer's Association was started by activists committed to advancing Alzheimer's knowledge through research.
The Alzheimer’s Association (Alzheimer's Association | Alzheimer's Disease & Dementia Help) was founded in 1980 by a group of family care providers and individuals who supported the need for an organization dedicated to support the needs of caregivers facing Alzheimer’s and to advance knowledge through research. As early activists for the Alzheimer’s movement, they sought to break down the silence of Alzheimer’s and learn more about the disease, including prevention, treatment and a cure.
Through a people-led approach, the association reaches millions of people globally through a multi-pronged approach grounded in individual and collective action. Advocacy to give all persons living with Alzheimer’s access to the support services they need includes strategies such as launching awareness campaigns and grassroots campaigns to impact legislation.
With multiple chapters throughout North America and globally, the Alzheimer’s Association includes a network of advocates and allies. These include other Alzheimer’s organizations, universities engaged in research, corporations and pharmaceuticals. As an example of a civil society organization, the Alzheimer’s Association is a community-based non-profit organization that has protected and advocated for the needs and interests of persons and families living with Alzheimer’s for over 40 years.
![Alzheimers Association](/sites/default/files/2024-02/CaseStudy_AlzheimersAssociation.png)
Knowledge-to-Action Framework
Adapting BPG recommendations to a Chinese acute care context to reform care delivery– lessons learned from DongZhiMen Hospital
Care practices were revised using adapted evidence-based best practice guidelines in an acute care facility in Beijing, China.
DongZhiMen Hospital – a BPSO in Beijing China – was motivated to reform care delivery through the use of RNAO BPGs. While best practice recommendations provided general guidance, DongZhimen Hospital identified the need to translate these statements into detailed instructions and parameters tailored to their specific hospital context.
To adapt statements to their context, they translated the guideline into Chinese. A multidisciplinary team then worked through the initial steps of the Knowledge-to-Action Framework. This involved:
- reviewing carefully the evidence to thoroughly understand the intent of the recommendations
- conducting a comprehensive gap analysis
- interviewing staff members and others to identify facilitators and barriers to the use of the BPG.
Using this information, the team was able to create specific, clinical nursing practice standards derived from the recommendations and relevant to their context (Hailing and Runxi, 2018).
![Dong Zhi Men Hospital](/sites/default/files/2024-02/CaseStudy_DongZhiMen.png)
Adapting BPG recommendations to a public health context – Insights from Toronto Public Health
Toronto Public Health – a Best Practice Spotlight Organization® (BPSO®) - has adapted several RNAO best practice guidelines (BPGs) to align with a population health approach.
Toronto Public Health – a Best Practice Spotlight Organization® (BPSO®) in Toronto, Canada – has implemented several RNAO best practice guidelines (BPGs), including Woman Abuse: Screening, Identification and Initial Response (2005) and Preventing and Addressing Abuse and Neglect of Older Adults (2014). Because some practice recommendations in these guidelines focus on the individual person or patient level, they didn’t always align with Toronto Public Health’s population health approach.
To adapt recommendations to the public health context, the change team completed a literature review to explore definitions and adapt strategies to align with the model of care delivery and health promotion philosophy.
Another approach that was taken by Toronto Public Health: piloting BPG recommendations within one small program team. The team would then evaluate the implementation until successful, consistent with the Plan-Do-Study-Act approach). Once successful, the intervention was scaled up within the organization to other programs and teams (Timmings et al., 2018).
![Toronto public health logo](/sites/default/files/2024-02/toronto.gif)
Adapting the Person- and Family-Centred Care best practice guideline to local context at Sioux Lookout Meno Ya Win Health Centre
Sioux Lookout Meno Ya Win Health Centre (SLMHC) is a pre-designate Best Practice Spotlight Organization® (BPSO®) in Sioux Lookout, a town in Northwestern Ontario. The service area is remote, isolated and encompasses 385,000 square kilometres, with a population that is 85 per cent First Nations. Learn more how this site adapted guidelines to their local context in this case study.
Sioux Lookout Meno Ya Win Health Centre (SLMHC) is a pre-designate Best Practice Spotlight Organization® (BPSO®) in Sioux Lookout, a town in Northwestern Ontario. SLMHC is a hub for inpatient and outpatient hospital services, providing services to including Sioux Lookout and 28 northern communities. The service area is remote, isolated and encompasses 385,000 square kilometres, with a population that is 85 per cent First Nations.
As part of its pre-designation process, the SLMHC change team implemented the Person- and Family- Centred Care (PFCC) best practice guideline (BPG). During implementation, the SLMHC change team worked to adapt the PFCC BPG to the local context of their organization in order to best serve the needs of the population in the surrounding areas as well as in other remote communities.
The SLMCH local context posed unique challenges. Among these:
- Standard guidance on privacy did not always apply to members of the First Nations communities served. Some members wished to have their health information shared with their chief and community.
- Some people must travel as far as 400 or 500 kilometers to return home after discharge from SLMHC. Thus, it was essential to arrange appropriate care transitions and make sure people being discharged would not lose personal belongings.
The SLMHC change team adapted the PFCC BPG to the local context by:
SLMHC Patient Oriented Discharge Summary. Shared with permission.
- placing names on the doors of the hospital rooms of some individuals, so their community members could stop by and visit.
- creating a Patient Oriented Discharge Summary (PODS) that included the following options to indicate the person’s preferences regarding sharing their health information:
- I agree to my health information being shared with________
- I do not agree with my health information being disclosed to people in my community (for example, band or council)
- creating a detailed staff checklist within the PODS to ensure safe care transitions (by, for example, faxing the completed form to an external Indigenous Transition Navigator, or listing personal items collected from the room).
- working with an Indigenous Transitions Facilitator, whose roles include conducting follow-up phone calls with the person, patient rounding, and coordinating safe transitions.
After successfully creating a tailored PODS that meets the need of the population they serve, SLMHC has been able to better support person- and family-centred care principles within the organization.
Shared with permission by Sioux Lookout Meno Ya Win Health Centre
![Sioux Lookout](/sites/default/files/2024-02/CaseStudy_SiouxLookout.png)
Engaging Persons with Lived Experiences
Integrating patient partners in change – Lessons learned from Kidney Health Australia
Kidnney Health Australia case study
In early 2018, Kidney Health Australia (KHA) developed a guideline for managing percutaneous renal biopsies for individuals with chronic kidney disease (Scholes-Robertson et al., 2019). KHA included 40 persons from across Australia with lived experience of chronic kidney disease and their caregivers – “patient partners”. KHA asked patient partners to prioritize which topics were most important to them during a percutaneous renal biopsy.
Patient partners valued: minimizing discomfort and disruption, protecting their kidneys, enabling self-management, and making sure that support for families and caregivers would be available. They indicated that all of this would help alleviate anxiety and avoid undue stress. Their voices were heard, and KHA effectively incorporated these suggestions in guideline development.
Notably, there were marked differences between the priorities identified by the content experts on the guideline development working group, versus what the patient partners perceived to be important to their health and wellbeing, as shown in the table below.
Topics prioritized by content experts |
Topics prioritized by patient partners |
|
|
![Kidney Health Australia](/sites/default/files/2024-02/kidney-health.gif)
Co-designing change through the active engagement of persons with lived experience - Holland Bloorview Kids Rehabilitation Hospital
Case study - Holland Bloorview
Holland Bloorview Kids Rehabilitation Hospital (Holland Bloorview) is a designated Best Practice Spotlight Organization® (BPSO®) in Toronto, Canada. Holland Bloorview has an award-winning Family Leadership Program (FLP), through which family leaders partner with the organization and the Bloorview Research Institute to co-design, shape and improve services, programs and policies.
These family leaders are families and caregivers who have received services at Holland Bloorview and have lived experiences of paediatric disability. Their roles include mentoring other families, acting as advisors to committees and working groups, and co-teaching workshops to students and other families.
One example of a successful implementation co-design within Holland Broadview is the ENFit™ Working Group. This interprofessional team works on the adoption of a new type of connection on products used for enteral feeding – or feeding directly through the stomach or intestine via a tube. By introducing the ENFit™ system, a best practice safety standard, the working group plans to reduce the risk of disconnecting the feeding tube from other medical tubes. This in turn decreases harm to children and youth who require enteral feeding.
The working group invited a family member and leader whose son had received services at Holland Bloorview. This family member had significant lived experience with enteral feeding management, enteral medication administration, and other complexities associated with enteral products. During the meetings, the potential impacts on persons and families were emphasized. The working group engaged the family member by:
- co-creating the implementation plan
- involving them in a failure mode and effects analysis highlighting the impact of the feeding tube supplies on transitions to home, school and other care settings
- working with the family member to advocate for safe transitions within the provincial pediatric system, which led to the development of the Ontario Pediatric ENFit™ Group
To learn more about Holland Bloorview’s experience in partnering with families in a co-design process, watch their 38-minute webinar: The Power of Family Partnerships
Shared with permission from Holland Bloorview
![Holland Bloorview Kids Rehabilitation Hospital](/sites/default/files/2024-02/holland-bloorview-green.gif)
Engaging Patient Family Advisors to advance guideline implementation at Scarborough Health Network
A case study about the integration of patient family advisors at Scarborough Health Network to enhance community engagement and health equity.
Scarborough Health Network (SHN) (Home - Scarborough Health Network (shn.ca) is an organization pursuing Best Practice Spotlight Organization® (BPSO®) designation in Scarborough, Ontario, Canada. Patient Family Advisors (PFAs) are a vital part of SHN’s philosophy of care, representing the diverse community SHN serves. A key element of the PFA role is sharing lived experiences with SHN staff and the Scarborough community.
SHN has demonstrated commitment to the role of PFAs within their organization by creating a new department for health equity, patient and community engagement (HEPCE). This department focuses on:
- recruiting, onboarding, managing, recognizing and retaining PFAs
- educating staff on best practices related to engaging with PFAs
During recruitment and onboarding, the HEPCE and current PFAs educate potential PFAs about the role’s scope and expectations. All PFAs are also provided with information on how to share their patient or caregiver story with their audience.
PFAs have played an important role in SHN’s BPSO committee. Indeed, one PFA has been integral to the process of recruiting and engaging champions at SHN throughout the COVID-19 pandemic’s health human resources (HHR) crisis. Their role has included participating in champions’ virtual drop-in sessions (2020-2021) and in-person roadshows (2022).
Champion roadshows are events during, which SHN practice leaders and PFAs promote the BPSO program, share best practice guidelines and recruit champions around the organization, without asking busy staff members to leave their units.
The PFA also supported the recruitment and engagement of champions by:
- collaborating with other champions and working group members to plan champions’ drop-in sessions and roadshows
- working alongside the team to plan safe spaces for staff and PFAs to share their stories
- sharing stories of positive experiences with staff members in relation to the impact of best practices (for example, RNAO’s Person and Family Centred-Care best practice guideline) on their experience
Staff members have reported being motivated to become best practice champions after attending a champion’s roadshow. SHN has also consistently gained champions during the HHR crisis and maintains at least 15 per cent of nursing staff as best practice champions.
The PFA’s role was vital to demonstrating the lasting impact of best practices. They have expressed feeling empowered by their role in BPSO work, expressing that the work helped them find their voice and become part of the movement to promote and implement best practices.
Overall, PFAs play an essential – and dual – role in supporting the implementation of best practices at SHN. In line with person- and family-centred care, PFAs assume an outward-facing role in shaping the implementation of best practices and SHN’s values. In addition, they also act in an inward-facing role to support the bolstering of champions.
To learn more about the PFA role at SHN, please visit the following link: Patient Family Advisors.
Shared with permission by Scarborough Health Network
![SHN](/sites/default/files/2024-02/CaseStudy_SHN.png)