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
Conducting gap analyses to successfully implement new clinical practices at Tilbury Manor
Tilbury Manor, a long-term care home, chose to focus on provincially-mandated “required programs” when seeking to improve resident care using a gap analysis.
Tilbury Manor, a 75-resident long-term care home in Tilbury chose to focus on provincially-mandated “required programs” (fall prevention, skin and wound care, continence care, bowel management and pain management) when seeking to improve resident care.
They conducted a gap analysis to compare their current practices with the best practices outlined in related RNAO best practice guidelines. Their analysis included an assessment of clinical practices, policies and documentation systems. The results of the gap analysis helped them create specific action plans.
Tilbury Manor then formed project teams led by nurses and supported by a team of champions. These teams proceeded to educate staff, implement new clinical practices, conduct care reviews and conduct audits.
Multiple positive outcomes were reported as a result of implementing these best practices including reductions in reports of pain, less use of restraints, and less falls, pressure ulcers and urinary tract infections.
Identifying the problem at Cardioinfantil Foundation of Cardiology Institute (FCI-IC) to achieve excellence in care
Cardioinfantil Foundation of Cardiology Institute is an acute care facility with a goal of achieving excellence in care in the prioritized areas of fall prevention and wound care.
Cardioinfantil Foundation of Cardiology Institute (FCI-IC) is a 340-bed hospital in Bogotá, Colombia. Recognizing that the use of best practice guidelines (BPG) for nursing care was uncommon in Colombia, they joined RNAO’s Best Practice Spotlight Organization® (BPSO®) program with the goal of achieving excellence in care.
FCI-IC had 10 years of evaluation data that revealed problems in specific clinical areas such as fall prevention and wound care. They conducted a baseline diagnostic evaluation to identify the highest priority problems to tackle and to select the most appropriate guidelines and best practice recommendations. As part of this, they surveyed their key partners in the change to learn more about their use of assessment tools, the status of electronic medical records, routine clinical practices such as the use of bed rails, and prevalence data.
This assessment process led to them selecting three RNAO BPGs as knowledge tools: Prevention of Falls and Fall Injuries in the Older Adult, Risk Assessment and Prevention of Pressure Ulcers, and Assessment and Management of Foot Ulcers for People with Diabetes.
Leveraging innovative quality monitoring - Humber River Hospital
Humber River Hospital is an acute care facility that has used continuous monitoring to determine the impact of BPG implementation and staff performance.
A major acute-care hospital in Toronto, Ontario, Humber River Hospital has used continuous monitoring to determine the impact of their BPG implementation and staff performance.
These tiles, displayed on large screen monitors in a Command Centre (pictured above), are integrated into the daily delivery of care to support physicians, nurses, and other clinical staff. Each row within the tile represents a patient, followed by where they are located. By clicking on a patient, staff can see more information regarding the clinical criteria that put them on the tile.
With every patient, there is an expected time in which the issue should be resolved based on a service level set by the hospital. If the system detects that the process is taking longer than expected, the icon will escalate to amber and then to red, indicating a higher level of alert.
Tiles also include several quality monitoring indicators based on RNAO's best practice guidelines (BPG) related to fall risk intervention, wound and skin management, pain management and delirium management. By centralizing data in the Command Centre, the monitoring indicators empower clinicians so that they can intervene in a timely manner to ensure that best practices are followed.
Read more about this innovative quality monitoring approach here: https://www.hrh.ca/2020/08/04/cc-risk-of-harm/
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
