More than words? Patient insights on the impact of medical apology

Co-leads:

  • Fiona MacDonald
    University of the Fraser Valley
  • Tannis Driedger
    Patient partner

Trainee:

  • Dempsey Wilford
    University of Victoria
  • Julie Morden 
    University of the Fraser Valley

Increasingly, jurisdictions are adopting “apology legislation” that allows clinicians to apologize to patients when an adverse event occurs while disallowing the introduction of the apology in a liability case as evidence of fault or liability.

Apology legislation exists in Canada, Australia, the USA and the UK. In Canada, nine provinces and two territories have adopted apology legislation (BC first adopted in 2006). An apology is defined in Canadian legislation as “Encompassing an expression of sympathy and regret and a statement that one is sorry, or any other words or actions indicating contrition or commiseration, whether or not the words or actions admit or imply an admission of fault” (CMPA website). While apology legislation is established in Canada, little is known about the impact of apologies on various stakeholders, or the impact the legislation has on health care more generally. The existing literature on medical apologies is largely focused on the American context and is often limited to the potential impacts rather than the actual impacts as they are experienced by stakeholders. It is unknown whether impacts are differentiated for specific patient groups, such as Indigenous populations whom, research consistently shows, often experience highly differentiated processes and outcomes in health care.

Data was collected in two provinces (BC and MB) from qualitative interviews with patients who experienced a medical error and who did or did not receive an apology. Data was also collected via interviews with patient safety experts, clinicians, health care administrators, and medical school administrators. There is rich data providing original insight into how and whether giving/receiving an apology improves learning, accountability, patient safety, and healing (for both the patient and clinician). With this data, YouTube videos, op-eds and blog posts will be developed to share the findings with patients, clinicians, and administrators. The dissemination products will emphasize these themes: 1) Various traumas associated with medical errors/mistreatment; 2) The components of a meaningful medical apology for clinicians and administrators; 3) Impacts of apology on both patient and clinician; 4) Indigenous perspectives on medical apologies.

The findings will be presented at the 2019 BCPSQC Quality Forum. Participants at this event include physicians, nurses, pharmacists, allied health professionals and students. 

Engaging champions in the process of embedding a type 2 diabetes prevention lifestyle program into a community setting: A collaborative approach

Co-leads:

  • Mary Jung
    University of Bristish Columbia Okanagan
  • Karlene Sewell
    YMCA Okanagan

Trainee:

  • Tineke Dineen
    University of British Columbia Okanagan
  • Corliss Bean
    University of British Columbia Okanagan

Translating effective health interventions into the community are often not applied in practice. The gap between research and practice is concerning for community members who can benefit from early access to effective health interventions. Knowledge translation (KT) activities and community partnerships are demonstrated methods to close the gap, yet there is a need for quality partnerships to ensure research findings are implemented into communities so it ensures sustainability, rigour and quality programming through planning, preparation and time to foster the partnership.

KT events can include dissemination and uptake of research evidence to further inform programming. Through a partnership between the YMCA of Okanagan, a leader in community programming, and the Small Steps for Big Changes (SSBC) research team, a group with an evidence-based program for improving health and exercise adherence in individuals with prediabetes, an influential partnership began with a goal to translate the SSBC program into the YMCA.

In this proposed work, the event aims to formally unite the two partners and establish a common goal, mission, vision and values. A key outcome is to establish a plan for the pilot of embedding the SSBC program into three YMCA locations within the Okanagan community. This plan is significant to the successful translation and sustainability of the program. Key to the success of the partnership is agreement on all aspects of the translation. The proposed work includes multiple translation events to work towards a long-term, successful partnership.

Vital to the collaborative nature of the partnership, feedback from YMCA of Okanagan managers, staff, past participants and present SSBC trainers will optimize the planning stages. Input from all parties will be collected and combined into a suitable plan, an appropriate training program, timeline for the translation, usability of program documents by YMCA staff and the respective roles of the YMCA and SSBC research team in program sustainability and ongoing fidelity. Finally, a video knowledge product will document the process of the partnership, with information about the program, outcomes and the partnership using video footage during the meetings and voice-over from SSBC alumni and YMCA staff. The knowledge product will be used for promotional material for distribution via each partner’s respective media platforms.

Promoting positive sexual health and protective factors for East Asian LGBTQ youth in BC

Co-leads:

Trainee:

  • Andrea Polonijo
    SARAVYC

The Stigma and Resilience Among Vulnerable Youth Centre (SARAVYC) has identified lesbian, gay, bisexual, trans, and queer (LGBTQ) health disparities for a range of physical and mental health outcomes. This work has also documented lower levels of family- and school-connectedness –– two key social supports that are protective factors for youth. East Asian LGBTQ youth are nearly 30 times more likely to face harassment and discrimination than their heterosexual peers, and are at higher risk of problematic drug and alcohol use. It may be especially difficult for these youth to find support within their families and communities, as LGBTQ topics can be stigmatizing for East Asian families.

Therefore, SARAVYC and Options for Sexual Health (Opt) will create and present culturally relevant materials to East Asian parents, youth and families, on youth sexual health and create supportive environments for LGBTQ youth. This team will work with SARAVYC’s East Asian advisory group to develop and present two evening events in English with simultaneous interpretation in Cantonese and Mandarin, an online slide deck, and education materials, translated into Cantonese-traditional Chinese, Mandarin-Simplified Chinese, Japanese, and Korean, which can be circulated in Opt offices and online. These knowledge translation activities will help East Asian parents support their adolescents' successful development of healthy relationships and sexual health overall, with information about LGBTQ youth integrated into the content.

There are three key objectives:

  1. Provide information in culturally appropriate and sensitive formats accessible to non-English speakers/readers.
  2. Create opportunities for parents to engage with experts in their own language.
  3. Develop awareness about LGBTQ health disparities among East Asian youth and increase knowledge of how parents can support their LGBTQ children.

To achieve these objectives, advisory meetings will be held in September and December to develop the content and format of the events and materials, and finalize the materials for translation. Event details will be confirmed in February and then advertising begins. Events are tentatively planned for April and May.

The event and materials will create a common vocabulary for parents to better speak with their youth about their sexual health and help support LGBTQ inclusivity. Materials will bridge language and cultural barriers often experienced by East Asians seeking advice and health care, and promote greater inclusivity and support in Opt clinics.

Knowledge translation for a new understanding of sexual pain in endometriosis

Co-leads:

  • Paul Yong
    University of British Columbia
  • Jessica Sutherland
    BC Women's Hospital + Health Centre

Trainee:

  • Natasha Orr
    University of British Columbia

One in 10 reproductive-aged women have endometriosis (where endometrial cells abnormally grow outside the uterus). This can lead to menstrual cramps and pain during bowel movements, pelvic movements, and vaginal penetration. This project focuses on deep penetration pain during sexual activity, which profoundly affects relationships and the sexual quality of life of women with endometriosis.

The interdisciplinary team at the BC Women’s Centre for Pelvic Pain and Endometriosis uses surgical-medical treatments, cognitive behavioural and mindfulness based therapies, and physiotherapy to treat women with endometriosis and sexual pain. The centre also has an active CIHR-funded clinical and translational research program, with a focus on sexual pain. Endometriosis-associated sexual pain may be due to endometriosis lesions and/or central nervous system sensitization and treatment efficacy may depend on the specific cause of the pain. The concept that pain may be due to central nervous system changes, and not directly to the endometriosis, may be difficult for some patients to understand. Therefore, there will be a one-day workshop explaining the multifactorial causes of sexual pain and patients will be provided with tools to manage their pain. The aim is to include women from the centre and women from the community along with their partners. This workshop will be created in collaboration with patient partners from start to finish, ensuring the learning objectives are patient-informed and the event is appropriate for the target audience.

The goals of this project are to:

  1. Develop a one-day workshop targeted to patients with endometriosis and their partners.
  2. Measure the impact of the workshop on patient understanding by using a short self-reported questionnaire created with patient partners.

The long-term goal is to effectively translate research findings on central nervous sensitization to patients with endometriosis so they gain a better understanding of the causes of their sexual pain.

  • Primary audience: women (patients).
  • Secondary audience members: patient partners/families, hospital foundation, researchers, physicians.

Co-creation of a resource toolkit for Indigenous community health representatives

Co-leads:

  • Shannon Bredin
    University of British Columbia
  • Rosalin Miles
    Indigenous Physical Activity & Cultural Circle

Trainee:

  • Erin Shellington
    University of British Columbia

Community Health Representatives (CHRs) are the contacts between community members and health care practitioners in BC’s Indigenous communities. CHRs play an important role in the health care system for Indigenous health; they provide cultural support and health education within these communities.

Improving lifestyle behaviours is an effective way to reduce the burden caused by obesity, diabetes, cardiovascular disease, and conditions that affect mental wellbeing within Indigenous peoples. However, there is limited accessibility to effective, culturally appropriate, Indigenous-led and community-based health and wellness resources for CHRs. Therefore, this project will create a resource toolkit for CHRs in BC’s rural Indigenous communities, which is Indigenous-led and integrates and respects the language, culture, and traditions of Indigenous communities.

The toolkit will be developed through co-creation activities with CHRs and Indigenous communities in partnership with Indigenous Studies in Kinesiology (School of Kinesiology, UBC) and the Indigenous Physical Activity and Cultural Circle.

Biologically informed ovarian cancer prevention: Promoting education and awareness

Co-leads:

Trainee:

  • Shaina Lee
    University of British Columbia

Over 11 percent of cancers and 9 percent of cancer deaths in women are from reproductive cancers. This represents a substantial disease burden; however, public dialogue levels and research funding doesn’t reflect this. Breast cancer, which has more public awareness, received 60 percent higher investment between 2005 and 2014 in research compared to reproductive cancers on a per case basis; this gap is even greater when comparison is based on cancer-related deaths. This team will create knowledge dissemination tools focusing on reproductive cancer prevention, to raise public awareness, and start a discussion about reproductive cancers. Public education could improve outcomes and lead to a national focus and investment in clinical care and research on reproductive cancers.

Prevention initiatives could reduce 1/4 of the 12,000 reproductive cancers that occur in Canada each year. Videos will be created and aimed at the target audience (women who can benefit from prevention), focused on three areas:

  1. Opportunistic salpingectomy (removal of fallopian tubes during hysterectomy or other pelvic surgery) to prevent ovarian cancer.
  2. Cervical cancer screening and prevention.
  3. Genetic testing for inherited risk factors.

These will be short, animated videos, less than three minutes, and succinctly describe the preventive strategy and current state of research. They will be posted on the OVCARE (BC’s multidisciplinary research group focusing on reproductive cancers) website (www.ovcare.ca) and linked through other outlets (other websites and online news sites, social media). A parallel set of videos will be created to convey the same information but designed for selected patient waiting areas and silenced to minimize disruption. Once created, these videos can be used at speaking events, fundraising events, and other venues. Along with inadequate funding for prevention research, participation in prevention activities has been identified as a barrier to uptake of prevention strategies. Education is one strategy to increase uptake.

This team has a strong track record of successful educational campaigns, informing clinicians and the public about opportunistic salpingectomy in 2010, and more recently to inform health care providers about new molecular stratification of endometrial cancers. It is hoped that this initiative will increase uptake of prevention activities and lead to greater public awareness of reproductive cancers.

ACCEss-SCI: Adapting community centres to enhance exercise in spinal cord injury

Co-leads:

  • Tania Lam
    University of British Columbia
  • Ross MacDonald
    City of Surrey
  • Jaine Priest 
    City of Vancouver

Trainee:

  • Alison Williams
    University of British Columbia
  • Sharon Jang
    University of British Columbia

There is overwhelming evidence that regular physical activity is critical for reducing secondary health complications and improving quality of life for people with spinal cord injury (SCI). However, individuals with SCI face many barriers to exercising; the most common is accessing appropriate fitness facilities and fitness professionals with specialized knowledge in adaptive physical activity.

Since 2013, the Physical Activity Research Centre (PARC) at the International Collaboration on Repair Discoveries (ICORD) has provided adaptive physical activity opportunities to over 300 individuals with SCI. PARC previously created professional development workshops about physical activity for individuals with SCI. These workshops were conducted for UBC students, SCI peers, and local community fitness leaders; they were well received and there is interest for more continuing education programming. Research was also conducted to show the feasibility, acceptance, and health benefits of adaptive group exercises programs such as arm “spin” classes, circuit training, and boxercise. The goal is to extend these initiatives to local settings.

The City of Surrey Parks, Recreation, and Culture department (CoS) and the Vancouver Board of Parks and Recreation (VPB) share a common vision with PARC — to make physical activity opportunities across the Lower Mainland universal and accessible to all. Both VPB and CoS have identified multiple community centres to expand adaptive physical activity programming, but need support to train fitness staff to advance this programming. This Reach award will facilitate the translation of PARC-created adaptive fitness programs to VPB and CoS community centres. PARC will support this translation by providing on-site training to community fitness leaders, professional development workshops, staff in-services, and an adaptive physical activity mentorship program. The benefits of these translational initiatives will be measured by the success in changing attitudes about physical disability and perceived barriers to implementing adaptive programs among community programmers and fitness instructors, and successful implementation of inclusive and integrated fitness class programs in VPB and CoS community centers.

A documentary communicating the major risk factors and evidence-based risk management strategies to prevent overdose in housing facilities

BC is facing a public health emergency due to the high number of overdose deaths. In 2017 alone, over 1,448 people died from drug overdose.

  • According to BC Coroner’s services, 58 percent of overdose deaths occurred in private residences (e.g. garage, trailer homes) and 27 percent in other housing facilities (e.g. rooming house, hotel/motel, homeless shelter, single room occupancy (SRO), drug recovery house, halfway house, group home, senior residence). The number of deaths in these housing facilities have increased from 19 percent (2016) to 27 percent (2017).
  • Coast Mental Health (CMH), which manages 37 housing facilities with approximately 4,000 residents across the Lower Mainland, have lost many residents due to overdose.

Staff at these facilities work closely with residents, creating an opportunity to provide support services. The UBC Addictions and Concurrent Disorders Group has partnered with CMH to facilitate implementation of evidence-based solutions within the housing facilities to prevent further overdose incidents. This partnership included gaining a better understanding, a clinical assessment of high-risk residents, and an opportunity to create a more appropriate service model.

Risk management of opioid overdose is complex and comes with risk factors spanning across health and social determinants of health. Communicating such complexities require knowledge exchange tools that engage and guide an individual through a logical pathway. This team will develop and distribute a 10-minute documentary that communicates the research evidence on the major risk factors of overdose fatalities and risk management strategies that housing facilities can implement.

The three major risk factors are unsupervised injection, concurrent disorders, and low opioid tolerance. This short documentary will be co-developed with CMH to engage housing providers through dynamic audiovisuals, narratives of those most affected by the overdose crisis, and animations. It will be distributed through a screening event and online channels (e.g. websites, YouTube, etc.). The knowledge acquired from this documentary will support non-profit housing organizations to integrate evidence-based risk management strategies into their practice to prevent further fatal and non-fatal overdose incidents.

Game on: Disseminating research for improving hospital dementia care

Co-leads:

  • Habib Chaudhury
    Simon Fraser University
  • Jan Robson
    Alzheimer Society of BC

Trainee:

  • Lillian Hung
    Simon Fraser University

Approximately 40 percent of older people in hospitals have dementia. Research suggests that hospital staff are ill-prepared to provide dementia care. There is an urgent need to increase dementia knowledge among hospital staff because an aging population is giving rise to patients with dementia. A literature review has identified three key challenges in hospital dementia education: (a) staff struggled to find time to attend workshops due to schedules and staffing shortage, (b) managers with tight budgets could not pay for conferences, workshops for staff education and replacement, (c) staff found classroom learning boring and difficult to retain.

To address these challenges, in 2017, the BC Patient Safety & Quality Council funded the development of an online game based on the PhD research findings of Lillian Hung in hospital dementia care. The game development was a collaboration between a team of clinical experts, VCH Learning & Technology, and a game design student at BCIT. Over 70 interdisciplinary VGH staff members participated in PDSA cycles to co-develop the game, called the ART & SCIENCE of Person-Centred Care, showing 10 dementia care approaches applicable in the hospital setting. The game was launched on the LearningHub, an online platform that enables staff in all BC health authorities to have free access, anywhere, anytime.

This project aims to facilitate a wider uptake of research in hospital dementia care by using gamification principles to motivate staff engagement in learning. This project integrates the expertise of researchers (Habib Chaudhury and Lillian Hung), research user co-lead (Jan Robson, Alzheimer Society Provincial Educator), and research users (local experts and decision makers) in BC health authorities — Fraser Health, Providence, Interior Health, Island Health, Northern Health, and Vancouver Coastal Health.

A knowledge translation workshop will bring researchers and research users together to work with a knowledge translation specialist (Lupin Battersby) from the BC SUPPORT Unit and a patient partner (Jim Mann) to co-develop a knowledge translation plan.

In the knowledge translation workshop, the team will:

  • Develop communication tools and key messages.
  • Determine strategies to problem solve local barriers.
  • Agree on knowledge translation processes, products and evaluation plan.

Expected outcomes:

  • An opportunity for provincial cross health authorities collaboration in knowledge dissemination.
  • Improving dementia care through increasing awareness and using the educational game for staff training.
  • Contribution to the science of knowledge-to-action by identifying lessons learned in this innovative project.

#LifeAndLoveWithHIV: A social media initiative to support the sexual health needs of women living with HIV

Co-leads:

  • Angela Kaida
    Simon Fraser University
  • Margarite Sanchez
    Positive Living Society of BC
  • Lori Brotto
    University of British Columbia

Trainee:

  • Allison Carter
    Simon Fraser University

Research on the sexual quality of life for women diagnosed with HIV is gaining momentum. Recent studies in BC and globally show that people with HIV, with undetectable levels of the virus in their blood, have a near-normal life expectancy and effectively no risk of sexual transmission of HIV. This project, #LifeAndLoveWithHIV: A social media initiative to support the sexual health needs of women living with HIV, aims to move this research evidence, along with lived experience perspectives about sexuality and relationships in HIV, directly into the hands of women living with HIV, including those who love and support them, by combining storytelling with online social media and activism.

This inter-disciplinary team of researchers and research users (including women living with HIV and care providers) has been working closely the past seven years to create new knowledge on sexual health and rights of women living with HIV. With support from an SFU Student Social Innovation Seed Grant and a CIHR Knowledge Synthesis Grant, a new open-access resource, www.lifeandlovewithHIV.ca (launched July 2018) was built to share this knowledge with women, partners, care providers, HIV policy makers, and the general public. This Reach award will allow the team to:

  1. Hire and mentor five women living with HIV as feature writers on this online magazine and blog; they will collectively produce 25 blog articles on sexuality and relationships, and be grounded in lived experiences and supported by research evidence.
  2. Implement and evaluate a social marketing initiative to promote uptake of this information, through a collection of YouTube videos, Facebook polls, Instagram images, Twitter parties, and hashtags such as #UntoldDesiresInCanada (which generated >20K impressions).

The dissemination plan includes measuring and evaluating the outcomes of this work. Through this initiative the aim is to reduce HIV stigma, support the sexual health needs of women living with HIV, to not only save, but also improve the quality of, women’s lives.