Public attitudes towards genomic data sharing: results from a provincial online survey in Canada.

BACKGROUND: While genomic data sharing can facilitate important health research and discovery benefits, these must be balanced against potential privacy risks and harms to individuals. Understanding public attitudes and perspectives on data sharing is important given these potential risks and to inform genomic research and policy that aligns with public preferences and needs. METHODS: A cross sectional online survey measured attitudes towards genomic data sharing among members of the general public in an Eastern Canadian province. RESULTS: Results showed a moderate comfort level with sharing genomic data, usually into restricted scientific databases with controlled access. Much lower comfort levels were observed for sharing data into open or publicly accessible databases. While respondents largely approved of sharing genomic data for health research permitted by a research ethics board, many general public members were concerned with who would have access to their data, with higher rates of approval for access from clinical or academic actors, but much more limited approval of access from commercial entities or governments. Prior knowledge about sequencing and about research ethics boards were both related to data sharing attitudes. CONCLUSIONS: With evolving regulations and guidelines for genomics research and data sharing, it is important to consider the perspectives of participants most impacted by these changes. Participant information materials and informed consent documents must be explicit about the safeguards in place to protect genomic data and the policies governing the sharing of data. Increased public awareness of the role of research ethics boards and of the need for genomic data sharing more broadly is also needed.

Operationalizing a patient engagement plan for health research: Sharing a codesigned planning template from a national clinical trial.

INTRODUCTION: Engaging with patients about their lived experience of health and illness and their experience within the healthcare system can help inform the provision of care, health policies and health research. In the context of health research, however, operationalizing the levels of patient engagement is not straightforward. We suggest that a key challenge to the routine inclusion of patients as partners in health research is a lack of tangible guidance regarding how this can be accomplished. METHODS: In this article, we provide guidance on how to codesign and operationalize a concrete patient engagement plan for any health research project. RESULTS: We illustrate a seven-step approach using the example of a national clinical trial in Canada and provide a patient engagement planning template for use in any health research project. CONCLUSION: Such concrete guidance should improve the design and reporting of patient engagement in health research. PATIENT OR PUBLIC CONTRIBUTION: The De-Implementing Wisely Research group is informed by a national 9-member patient partner council (PPC). The research team includes three lead patient partners who are coinvestigators on the grant that funds the program of research. Members of the council advise on all aspects of the study design and implementation. The ideas presented in this paper were informed by regular communication and planning with the PPC; specific contributions of lead patient partner authors are outlined as follows: Brian Johnston, Susan Goold and Vanessa Francis are patient partners with a wide breadth of experience in the healthcare system and health research projects. The guidance in this article draws on their lived and professional expertise. All patient partner authors contributed to the planning of the manuscript, participated in meetings to develop content and provided critical manuscript edits and comments on drafts.

Mothers' experiences of breastfeeding a child with tongue-tie.

Tongue-tie is characterized by an abnormally tight, short and thick lingual frenulum restricting the tongue's movement. This functional impairment can hinder a child's ability to maintain an effective latch and suckle and may lead to complex breastfeeding difficulties. The primary aim of this study was to explore the experiences of mothers who have breastfed a child with tongue-tie, including their experiences with the health care system. A qualitative description study design was used. Two semistructured focus groups were conducted in February 2016 with a total of nine participants in the largest metropolitan area of Newfoundland and Labrador, Canada. Content analysis using constant comparison revealed a common incongruity between participants' breastfeeding expectations and their actual experiences of feeding a child with tongue-tie. Three major themes are discussed: mothers' well-being, strained interpersonal relationships and frustration with the health care system.

Sociodemographics and their impacts on risk factor awareness and beliefs about cancer and screening: results from a cross-sectional study in Newfoundland and Labrador.

BACKGROUND: Our objective was to examine cancer risk factor awareness and beliefs about cancer treatment, outcomes, and screening, and how these are mediated by sociodemographic variables, among Newfoundland and Labrador residents. METHODS: Participants aged 35 to 74 were recruited through Facebook advertising, and a self-administered online questionnaire was used to collect data. Descriptive statistics, Spearman rank correlations, and multivariate logistic regression analyses were performed. RESULTS: Of the 1048 participants who responded and met the inclusion criteria for this study, 1019 were selected for this analysis. Risk factor recognition was generally good, though several risk factors had poor awareness: being over 70 years old (53.4% respondents aware), having a low-fiber diet (65.0%), and drinking more than 1 unit of alcohol per day (62.8%). Our results showed that the participants' awareness of risk factors was significantly associated with higher income level (rs = 0.237, P <  0.001), higher education (rs = 0.231, P <  0.001), living in rural regions (rs = 0.163, P <  0.001), and having a regular healthcare provider (rs = 0.081, P = 0.010). Logistic regression showed that among NL residents in our sample, those with higher income, post-secondary education, those in very good or excellent health, and those with a history of cancer all had higher odds of having more positive beliefs about cancer treatment and outcomes. Those with a history of cancer, and those with very good or excellent health, also had higher odds of having more positive beliefs about cancer screening. Finally, compared to Caucasian/white participants, those who were non-Caucasian/white had lower odds of having more positive beliefs about cancer screening. CONCLUSION: Among adults in NL, there was poor awareness that low-fiber diets, alcohol, and age are risk factors for cancer. Lower income and education, rural residence, and not having a health care provider were associated with lower risk factor awareness. We also found a few associations between sociodemographic factors and beliefs about cancer treatment and outcomes or screening. We stress that while addressing awareness is necessary, so too is improving social circumstances of disadvantaged groups who lack the resources necessary to adopt healthy behaviours.

Are general practitioners referring patients with low back pain for CTs appropriately according to the guidelines: a retrospective review of 3609 medical records in Newfoundland using routinely collected data.

BACKGROUND: CT Imaging is often requested for patients with low back pain (LBP) by their general practitioners. It is currently unknown what reasons are common for these referrals and if CT images are ordered according to guidelines in one province in Canada, which has high rates of CT imaging. The objective of this study is to categorise lumbar spine CT referrals into serious spinal pathology, radicular syndrome, and non-specific LBP and evaluate the appropriateness of CT imaging referrals from general practitioners for patients with LBP. METHODS: A retrospective medical record review of electronic health records was performed in one health region in Newfoundland and Labrador, Canada. Inclusion criteria were lumbar spine CT referrals ordered by general practitioners for adults ≥18 years, and performed between January 1st-December 31st, 2016. Each CT referral was identified from linked databases (Meditech and PACS). To the study authors' knowledge, guidelines regarding when to refer patients with low back pain for CT imaging had not been actively disseminated to general practitioners or implemented at clinics/hospitals during this time period. Data were manually extracted and categorised into three groups: red flag conditions (judged to be an appropriate referral), radicular syndrome (judged be unclear appropriateness), or nonspecific LBP (determined to be inappropriate). RESULTS: Three thousand six hundred nine lumbar spine CTs were included from 2016. The mean age of participants was 54.7 (SD 14 years), with females comprising 54.6% of referrals. 1.9% of lumbar CT referrals were missing/unclear, 6.5% of CTs were ordered on a red-flag suspicion, 75.6% for radicular syndromes, and 16.0% for non-specific LBP; only 6.5% of referrals were clearly appropriate. Key information including patient history and clinical exams performed at appointment were often missing from referrals. CONCLUSION: This audit found high proportions of inappropriate or questionable referrals for lumbar spine CT and many were missing information needed to categorise. Further research to understand the drivers of inappropriate imaging and cost to the healthcare system would be beneficial.

Group plus "mini" individual pre-test genetic counselling sessions for hereditary cancer shorten provider time and improve patient satisfaction.

BACKGROUND: Genetic counselling (GC) is an integral component in the care of individuals at risk for hereditary cancer predisposition syndromes (CPS). In many jurisdictions, access to timely counselling and testing is limited by financial constraints, by the shortage of genetics professionals and by labor-intensive traditional models of individual pre and post-test counselling. There is a need for further research regarding alternate methods of GC service delivery and implementation. This quality improvement project was initiated to determine if pretest group GC followed immediately by a 'mini' individual session, would be acceptable to patients at risk for hereditary breast and colon cancer. METHODS: Patients on waitlists for GC at the Provincial Medical Genetics Program in St. John's, NL, Canada (n = 112), were contacted by telephone and offered the option of a group counselling session (GGC), followed by a "mini" individual session, versus (TGC) traditional private appointments. GGC sessions consisted of a cancer genetics information session given to groups of 6-20 followed by brief 20 min "mini" individual sessions with the patient and genetic specialist. TGC individual appointments provided the same cancer genetics information and counselling to one patient at a time in the classic model. All but 2 participants selected group+mini session. A de-identified confidential 12-item, Likert scale survey was distributed at the conclusion of mini-sessions to measure perceptions of GGC and satisfaction with this counselling model. RESULTS: Sixty participants completed questionnaires. The majority of participants strongly agreed that they were comfortable with the group session (58/60); the explanation of cancer genetics was clear (54/59); they understood their cancer risks (50/60); and they would recommend such a session to others (56/59). 38/53 respondents disagreed or strongly disagreed that they would prefer to wait for a traditional private appointment. All 5 participating genetic counselors reported a preference for this model. At the end of the pilot project, the waitlist for counselling/testing was reduced by 12 months. CONCLUSIONS: Group pre-test genetic counselling combined with immediate "mini" individual session is strongly supported by patients and reduces wait times. Additional formal investigation of this approach in larger numbers of patients is warranted.

The Quality of Care in the Emergency Management of Cancer Patients With Febrile Neutropenia: A Records-Based Cohort.

INTRODUCTION: Febrile neutropenia is one of the most severe oncological emergencies associated with the treatment of cancer. Patients with febrile neutropenia are at grave risk of developing life-threatening sepsis unless there is rapid initiation of treatment. The aim of this study was to evaluate the quality of ED care of patients with febrile neutropenia using the 3 quality dimensions of safety, effectiveness, and timeliness of care. METHODS: A retrospective review of all available records of adult cancer patients with febrile neutropenia who presented to 1 urban emergency department in Atlantic Canada was conducted over 5 years. RESULTS: Examining the 9 quality indicators of the 431 patients included in the study identified areas for improvement in each of the 3 dimensions. More than one third of the participants were unsafely discharged from the emergency department despite the severity of their conditions. Patients in the study were not seen promptly by the physician and did not receive timely treatment during different phases of their visit. Most importantly, the delay in antibiotic administration presented a major risk for this population. DISCUSSION: Aspects of care provided to this cohort of febrile neutropenia patients were inconsistent with the recommended evidence. Strengthening ED care is necessary to reduce the gap between evidence-based and actual care. Quality initiatives can be implemented to improve care to become safer, effective, and timely. Nurses who are in direct contact with the patients and who are actively involved in every single process of the health care system are well positioned to lead this change.

Using Facebook Advertising to Recruit Representative Samples: Feasibility Assessment of a Cross-Sectional Survey.

BACKGROUND: Facebook has shown promise as an economical means of recruiting participants for health research. However, few studies have evaluated this recruitment method in Canada, fewer still targeting older adults, and, to our knowledge, none specifically in Newfoundland and Labrador (NL). OBJECTIVE: This study aimed to assess Facebook advertising as an economical means of recruiting a representative sample of adults aged 35 to 74 years in NL for a cross-sectional health survey. METHODS: Facebook advertising was used to recruit for a Web-based survey on cancer awareness and prevention during April and May 2018; during recruitment, additional advertisements were targeted to increase representation of demographics that we identified as being underrepresented in our sample. Sociodemographic and health characteristics of the study sample were compared with distributions of the underlying population to determine representativeness. Cramer V indicates the magnitude of the difference between the sample and population distributions, interpreted as small (Cramer V=0.10), medium (0.30), and large (0.50). Sample characteristics were considered representative if there was no statistically significant difference in distributions (chi-square P>.01) or if the difference was small (V≤0.10), and practically representative if 0.10

Surgical treatment choices for breast cancer in Newfoundland and Labrador: a retrospective cohort study.

BACKGROUND: Mastectomy is often chosen by women for treatment of breast cancer, even when breast-conserving surgery (BCS) is an option. Newfoundland and Labrador has a high mastectomy rate. We documented the number of breast cancers over a given period in the province and their related surgical treatments, and explored the impact of several variables on surgical choice. METHODS: A retrospective cohort design linked diagnosis data from the Newfoundland and Labrador tumour registry to surgery data from the Canadian Institute for Health Information Discharge Abstract Database. Data were extracted for all women aged 19 years or more in whom breast cancer was diagnosed in 2009-2014. RESULTS: A total of 2346 cases of breast cancer with a linked surgical procedure were included. Most operations (1605 [68.4%]) were mastectomy procedures, with the remainder being BCS. Logistic regression analysis revealed that women were 1.82 times (95% confidence interval [CI] 1.64-2.02) more likely to have mastectomy for each unit of stage increase from 0 to IV and 1.15 times (95% CI 1.11-1.21) more likely for each unit of driving time increase. CONCLUSION: Tumour stage and driving time to a radiation facility significantly predicted Newfoundland and Labrador women's surgical treatment choices for breast cancer. Notably, mastectomy was the favoured choice across all age groups, tumour stages and geographical regions of the province. We hope that these results will galvanize efforts to better understand local surgical practices and assist in improving the quality of surgical care of women with breast cancer.

CONTEXTE: Les femmes atteintes d'un cancer du sein optent souvent pour la mastectomie, même lorsque la chirurgie mammaire conservatrice (CMC) est possible. Considérant que la province de Terre-Neuve-et-Labrador enregistre des taux de mastectomie élevés, nous y avons recensé durant une période donnée les cas de cancer du sein et les traitements chirurgicaux associés, et avons étudié l'influence de plusieurs variables sur le choix d'intervention. MÉTHODES: Suivant un modèle de cohorte rétrospective, nous avons apparié les données diagnostiques du registre des cancers de Terre-Neuve-et-Labrador aux données chirurgicales correspondantes de la Base de données sur les congés des patients de l'Institut canadien d'information sur la santé. Nous avons extrait les données de toutes les femmes de 19 ans et plus qui ont reçu un diagnostic de cancer du sein entre 2009 et 2014. RÉSULTATS: Nous avons retenu 2346 cas de cancer du sein avec prise en charge chirurgicale. La majorité des interventions (1605, ou 68,4 %) étaient des mastectomies; les autres étaient des CMC. Une analyse de régression logistique a révélé qu'avec chaque augmentation unitaire du stade (de 0 à 4), les femmes devenaient 1,82 fois plus susceptibles d'opter pour la mastectomie (intervalle de confiance [IC] de 95 % 1,64 à 2,02), et 1,15 fois plus susceptibles de le faire avec chaque augmentation unitaire du temps de conduite (IC de 95 % 1,11 à 1,21). CONCLUSION: Le stade de la tumeur et le temps nécessaire pour se rendre dans un établissement de radiothérapie étaient des facteurs prédictifs significatifs du choix de traitement chirurgical du cancer du sein chez les femmes de Terre-Neuve-et-Labrador. Fait intéressant : tous les groupes, quels que soient leur âge, le stade de leur tumeur et leur région de la province, avaient une préférence pour la mastectomie. Nous espérons que ces résultats mèneront à d'autres analyses des pratiques chirurgicales locales et contribueront à améliorer la qualité de la prise en charge chirurgicale des femmes atteintes d'un cancer du sein.

Engaging patients in health research: identifying research priorities through community town halls.

BACKGROUND: The vision of Canada's Strategy for Patient-Oriented Research is that patients be actively engaged as partners in health research. Support units have been created across Canada to build capacity in patient-oriented research and facilitate its conduct. This study aimed to explore patients' health research priorities in the province of Newfoundland and Labrador (NL). METHODS: Eight town halls were held with members of the general public in rural and urban settings across the province. Sessions were a hybrid information-consultation event, with key questions about health research priorities and outcomes guiding the discussion. RESULTS: Sixty eight members of the public attended town hall sessions. A broad range of health experiences in the healthcare system were recounted. Key priorities for the public included access and availability of providers and services, disease prevention and health promotion, and follow-up support and community care. In discussing their health research priorities, participants spontaneously raised a broad range of suggestions for improving the healthcare system in our jurisdiction. CONCLUSIONS: Public research priorities and suggestions for improving the provision of healthcare provide valuable information to guide Support Units' planning and priority-setting processes. A range of research areas were raised as priorities for patients that are likely comparable to other healthcare systems. These create a number of health research questions that would be in line with public priorities. Findings also provide lessons learned for others and add to the evidence base on patient engagement methods.

Perceived economic burden associated with an inherited cardiac condition: a qualitative inquiry with families affected by arrhythmogenic right ventricular cardiomyopathy.

PURPOSE: Significant gaps remain in the literature on the economic burden of genetic illness. We explored perceived economic burden associated with one inherited cardiac condition, arrhythmogenic right ventricular cardiomyopathy (ARVC). METHODS: Semistructured interviews were held with individuals from families affected by ARVC. Data on the perceived financial and economic impacts of ARVC were used to identify emerging categories and themes using the method of constant comparison. RESULTS: Data analysis revealed four themes that described participants' perceptions of the economic impact ARVC had on them and their families: (i) economic impact during childhood, (ii) impact on current and future employment, (iii) impact on current and future financial well-being, and (iv) no perceived economic impact. CONCLUSIONS: This study is the first to explore the economic burden of ARVC from the perspective of affected families. It revealed a number of perceived burdens, from employment and career choices to worry about insurance for self and children, decreased household spending, and the need for childhood employment. Findings highlight potential areas of discussion for genetic counseling sessions, as well as areas for future research.Genet Med 18 6, 584-592.

Reflections on the cost of "low-cost" whole genome sequencing: framing the health policy debate.

The cost of whole genome sequencing is dropping rapidly. There has been a great deal of enthusiasm about the potential for this technological advance to transform clinical care. Given the interest and significant investment in genomics, this seems an ideal time to consider what the evidence tells us about potential benefits and harms, particularly in the context of health care policy. The scale and pace of adoption of this powerful new technology should be driven by clinical need, clinical evidence, and a commitment to put patients at the centre of health care policy.

Community engagement with genetics: public perceptions and expectations about genetics research.

BACKGROUND: Knowledge of molecular biology and genomics continues to expand rapidly, promising numerous opportunities for improving health. However, a key aspect of the success of genomic medicine is related to public understanding and acceptance. DESIGN: Using community consultations and an online survey, we explored public attitudes and expectations about genomics research. RESULTS: Thirty-three members of the general public in Newfoundland, Canada, took part in the community sessions, while 1024 Atlantic Canadians completed the online survey. Overall, many participants noted they lacked knowledge about genetics and associated research and took the opportunity to ask numerous questions throughout sessions. Participants were largely hopeful about genomics research in its capacity to improve health, not only for current residents, but also for future generations. However, they did not accept such research uncritically, and a variety of complex issues and questions arose during the community consultations and were reflected in survey responses. DISCUSSION: With the proliferation of biobanks and the rapid pace of discoveries in genomics research, public support will be crucial to realize health improvements. If researchers can engage the public in regular, transparent dialogue, this two-way communication could allow greater understanding of the research process and the design of efficient and effective genetic health services, informed by the public that will use them.

Education and parental involvement in decision-making about newborn screening: understanding goals to clarify content.

A challenge in designing effective education for parents about newborn screening (NBS) has been uncertainty about appropriate content. Arguing that the goals of education may be usefully tied to parental decision-making, we sought to: (1) explore how different ways of implementing NBS differ in their approaches to parental engagement in decision-making; (2) map the potential goals of education onto these "implementation models"; and (3) consider the content that may be needed to support these goals. The resulting conceptual framework supports the availability of comprehensive information about NBS for parents, irrespective of the model of implementation. This is largely because we argue that meeting parental expectations and preferences for communication is an important goal regardless of whether or notparents are actively involved in making a decision. Our analysis supports a flexible approach, in which some educational messages are emphasized as important for all parents to understand while others are made available depending on parents' preferences. We have begun to define the content of NBS education for parents needed to support specific goals. Further research and discussion is important to determine the most appropriate strategies for delivering the tailored approach to education that emerged from our analysis.

Decisions about prophylactic gynecologic surgery: a qualitative study of the experience of female Lynch syndrome mutation carriers.

BACKGROUND: Women who carry a mutation for Lynch syndrome face complex decisions regarding strategies for managing their increased cancer risks. At present, there is limited understanding of the factors influencing women's prophylactic surgery decisions. METHODS: As part of an exploratory pilot project, semi-structured interviews were conducted with 10 women who were Lynch syndrome mutation carriers and had made prophylactic surgery decisions. Nine of 10 women had chosen to undergo prophylactic hysterectomy and/or oophorectomy as a means of managing their increased gynecological cancer risks. RESULTS: Study findings revealed that surgery decisions were influenced by multiple factors, including demographic variables such as age and parity, as well as psychosocial factors such as cancer worry, in addition to personal and social knowledge of gynecological cancer. While all women were satisfied with their surgery decision, some reported they were not fully informed about the negative impact on their quality of life post-surgery (e.g., complications of surgically-induced menopause), nor about the potential for, or risks and benefits of, hormone replacement therapy. CONCLUSIONS: Study findings highlight some of the factors associated with prophylactic surgery decisions and women's perceptions about pre-surgical information provision and needs. Suggestions are made for improving the information and support provided to female carriers of a Lynch syndrome mutation.

Use of natural health products in children: qualitative analysis of parents' experiences.

OBJECTIVE: To gain a more thorough understanding of why parents choose to give their children natural health products (NHPs), parents' sources of information about NHPs, and the extent of disclosure and conversation with family doctors about the use of NHPs. DESIGN: Qualitative study. SETTING: Newfoundland and Labrador. PARTICIPANTS: Parents of children who were using NHPs (N = 20). METHODS: Individual, semistructured interviews were carried out with parents to obtain a better understanding of the reasoning behind the use of NHPs. Key themes emerging from the qualitative data were identified according to a number of criteria, including relevance to the research objectives, frequency with which a theme was mentioned, relative importance of the themes based on the amount of text taken up to address an issue, and emphasis (eg, emphatic or emotional speech). MAIN FINDINGS: The types of NHPs used by parents participating in this study varied, except for the use of multivitamins. In addition, use of the products themselves was variable and inconsistent. Parents reported few concerns about the use of NHPs. The most commonly reported source of information about NHPs was family and friends. Most participants had not spoken to their family doctors about the use of NHPs. CONCLUSION: Participants considered NHPs to be "natural" and seemed to equate this assessment with safety. This might explain why these parents sought advice and information from family and friends rather than from their family doctors and often failed to disclose the use of NHPs to their children's family doctors.

Cultural differences in family communication about inherited cancer: implications for cancer genetics research.

It is widely accepted that clinical genetic services should provide culturally competent service to clients. However, systematic research is needed on the cultural meanings of heredity, family cancer, and family communication about inherited risk in order to move towards culturally competent cancer genetic services. Cultural differences in how families communicate about inherited risk is a particularly important, but neglected, research focus. The purpose of this paper is to: (1) review extant literature on cultural differences in family communication about inherited cancer risk; and (2) provide suggestions for cancer genetics research that will ultimately help furnish the evidence base for the training and provision of culturally competent cancer genetics services.

Specialty Care and Counselling about Hereditary Cancer Risk Improves Adherence to Cancer Screening and Prevention in Newfoundland and Labrador Patients with BRCA1/2 Pathogenic Variants: A Population-Based Retrospective Cohort Study.

Pathogenic variants (PVs) in BRCA1 and BRCA2 increase the lifetime risks of breast and ovarian cancer. Guidelines recommend breast screening (magnetic resonance imaging (MRI) and mammogram) or risk-reducing mastectomy (RRM) and salpingo-oophorectomy (RRSO). We sought to (1) characterize the population of BRCA1/2 PV carriers in Newfoundland and Labrador (NL), (2) evaluate risk-reducing interventions, and (3) identify factors influencing screening and prevention adherence. We conducted a retrospective study from a population-based provincial cohort of BRCA1/2 PV carriers. The eligibility criteria for risk-reducing interventions were defined for each case and patients were categorized based on their level of adherence with recommendations. Chi-squared and regression analyses were used to determine which factors influenced uptake and level of adherence. A total of 276 BRCA1/2 PV carriers were identified; 156 living NL biological females composed the study population. Unaffected females were younger at testing than those with a cancer diagnosis (44.4 years versus 51.7 years; p = 0.002). Categorized by eligibility, 61.0%, 61.6%, 39.0%, and 75.7% of patients underwent MRI, mammogram, RRM, and RRSO, respectively. Individuals with breast cancer were more likely to have RRM (64.7% versus 35.3%; p < 0.001), and those who attended a specialty hereditary cancer clinic were more likely to be adherent to recommendations (73.2% versus 13.4%; p < 0.001) and to undergo RRSO (84.1% versus 15.9%; p < 0.001). Nearly 40% of the female BRCA1/2 PV carriers were not receiving breast surveillance according to evidence-based recommendations. Cancer risk reduction and uptake of breast imaging and prophylactic surgeries are significantly higher in patients who receive dedicated specialty care. Organized hereditary cancer prevention programs will be a valuable component of Canadian healthcare systems and have the potential to reduce the burden of disease countrywide.

Beyond Sterilization: A Comprehensive Review on the Safety and Efficacy of Opportunistic Salpingectomy as a Preventative Strategy for Ovarian Cancer.

Ovarian cancer (OC) is Canada's third most common gynecological cancer, with an estimated 3000 new cases and 1950 deaths projected in 2022. No effective screening has been found to identify OC, especially the most common subtype, high-grade serous carcinoma (HGSC), at an earlier, curable stage. In patients with hereditary predispositions such as BRCA mutations, the rates of HGSC are significantly elevated, leading to the use of risk-reducing salpingo-oophorectomy as the key preventative intervention. Although surgery has been shown to prevent HGSC in high-risk women, the associated premature menopause has adverse long-term sequelae and mortality due to non-cancer causes. The fact that 75% of HGSCs are sporadic means that most women diagnosed with HGSC will not have had the option to avail of either screening or prevention. Recent research suggests that the fimbrial distal fallopian tube is the most likely origin of HGSC. This has led to the development of a prevention plan for the general population: opportunistic salpingectomy, the removal of both fallopian tubes. This article aims to compile and review the studies evaluating the effect of opportunistic salpingectomy on surgical-related complications, ovarian reserve, cost, and OC incidence when performed along with hysterectomy or instead of tubal ligation in the general population.

"I think there has to be a mutual respect for there to be value": Evaluating patient engagement in a national clinical trial on de-implementation of low value care.

BACKGROUND: The evaluation of patient engagement in research is understudied and under-reported, making it difficult to know what engagement strategies work best and when. We provide the results of an evaluation of patient engagement in a large Canadian research program focused on the de-implementation of low-value care. We aimed to evaluate the experience and impact of patient engagement in the study. METHODS: An online cross-sectional survey was administered using Microsoft Forms to (1) researchers and study staff and (2) patient partners. The survey was developed following iterative reviews by the project's patient partnership council and evaluation committee. Survey content areas included opinions on patient engagement to date, including challenges to engagement and suggestions for improvement. Patient partners also evaluated the partnership council. Descriptive statistics including counts and percentages described Likert scale survey items, while open comments were analyzed using descriptive content analysis. RESULTS: The survey response rate was 46% (17/37). There were positive attitudes about the value of patient engagement in this project. There was also a high degree of willingness to be involved with patient engagement in future projects, whether as a patient partner or as a researcher including patients on the research team. Most patient partners felt their contributions to the project were valued by researchers and study research staff. Open comments revealed that a co-design approach and full inclusion on the research team were integral to demonstrating the value of patient partner input. Areas for improvement included more frequent and ongoing communication among all team members, as well as earlier training about patient engagement, particularly addressing role expectations and role clarity. CONCLUSIONS: Our data revealed that despite some challenges, team members recognized the value of patient engagement in research and agreed project decisions had been impacted by patient partner input. Ongoing communication was highlighted as an area for improvement, as well as earlier training and ongoing support for all team members, but particularly researchers and study staff. In response to evaluation data, the team has reinstated a quarterly newsletter and plans to use specific patient engagement planning templates across study sites for all project activities. These tools should help make expectations clear for all team members and contribute to a positive patient engagement experience. Findings can inform patient engagement planning and evaluation for other health research projects.

Evaluating patient engagement in research is often not done or not reported, making it hard to know what engagement strategies work best and when. Here, we provide the results of an evaluation of patient engagement in a Canadian Institutes for Health Research (CIHR) Strategy for Patient Oriented Research (SPOR) Innovative Clinical Trial Multi-Year Grant. The project focuses on strategies to reduce two low-value care practices (pre-operative testing in low-risk day surgery and imaging for low back pain). An online survey was sent to project researchers, study staff and patient partners to get their opinions on the patient engagement in the project. Generally, there were positive attitudes about the value of patient engagement in the project. Both patient partners and research study staff were very willing to be involved with patient engagement in future projects. Most patient partners felt their contributions to the project were valued by researchers and study research staff. An important part of showing the value of patient partners was working together to design the project and making sure that the patient partners were considered full members of the research team. Areas for improvement included better communication among all team members and earlier training about patient engagement with a focus on patient roles and expectations. The results from this survey will be used to improve the patient engagement in this project but will also help patient engagement planning and evaluation for other health research projects.