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
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
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.
Knowledge-to-Action Framework
Sustaining the Assessment and Management of Pain Best Practice Guideline across a multi-site long-term care home
The Region of Peel, a Best Practice Spotlight Organization® (BPSO®), has sustained the implementation of the Assessment and Management of Pain best practice guideline (BPG) for almost a decade.
The Region of Peel, an RNAO Best Practice Spotlight Organization® (BPSO®) started implementing the RNAO Assessment and Management of Pain best practice guideline (BPG) in 2014 and has sustained its use since then. For example, in their 2019 BPSO annual report, they cited a continuous downward trend in the number of clients who reported a worsening of their pain. Pain experienced by the residents was better controlled, and the staff was found to assess, identify, and manage pain better by using the BPG.
Their keys to success include:
- building on what works (for example, existing practices and policies)
- empowering champions and growing their champion network
- involving residents and families
- gaining support from leaders and partners including RNAO, Peel of Region Leadership, Health Quality Ontario).
- collaborating with an interdisciplinary team
- conducting a formal sustainability evaluation
To learn more about The Region of Peel’s journey in sustaining the use of the Assessing and Managing Pain BPG, along with other BPGs, check out this webinar.
Overcoming barriers to evidence-based practice – Lessons learned from DongZhiMen Hospital and Beijing University of Chinese Medicine (BUCM) School of Nursing
DongZhiMen Hospital and Beijing University of Chinese Medicine (BUCM) School of Nursing are international BPSOs in Beijing, China. Staff at the sites identified barriers to the use of evidence in practice including heavy workloads, cultural differences and reluctant attitudes about using evidence to inform practice.
DongZhiMen Hospital and Beijing University of Chinese Medicine (BUCM) School of Nursing are international BPSOs in Beijing, China. They identified barriers to the use of evidence in practice including heavy workloads, cultural differences and reluctant attitudes about using evidence to inform practice. The assessment and identification of barriers allowed change teams to develop effective strategies for implementation with the input of stakeholders.
For example, for the implementation of the RNAO best practice guideline Assessment and management of foot ulcers for people with diabetes, barriers included
- nursing shortages across China,
- a lack of training to support the development of knowledge and skills in evidence-based nursing practice,
- the costs of guideline implementation. and
- practice recommendations that exceeded local nursing scope.
SOURCE: Transforming Nursing Through Knowledge, 2018.
Facilitating an evidence-based culture at Unity Health Toronto - St. Michael’s Hospital
Unity Health Toronto - St. Michael’s Hospital, a Best Practice Spotlight Organization® (BPSO®) has embedded evidence-based practices into its culture and daily work processes as part of its corporate strategy.
Unity Health Toronto - St. Michael’s Hospital, a Best Practice Spotlight Organization® (BPSO®) in Toronto, Canada, has embedded evidence-based practices into its culture and daily work processes. Evidence-based practice is part of the hospital’s corporate strategy. It has invested resources to build a critical mass (over 30 per cent) of staff members who are best practice champions.
The hospital also provides multiple capacity-building opportunities, including a community of practice, boot camps, booster sessions and mentorship. The annual Nursing Week Gallery Walk, depicted in the image above, is just one way that St. Michael’s Hospital profiles the work of champions and others dedicated to using evidence to inform change initiatives.
SOURCE: Transforming Nursing Through Knowledge, 2018.
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.
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Topics prioritized by content experts |
Topics prioritized by patient partners |
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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
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
