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Changes in digital technology, increasing volume of data collection, and advances in methods have the potential to unleash the value of big data generated through the education of health professionals. Coupled with this potential are legitimate concerns about how data can be used or misused in ways that limit autonomy, equity, or harm stakeholders. This consensus statement is intended to address these issues by foregrounding the ethical imperatives for engaging with big data as well as the potential risks and challenges. Recognizing the wide and ever evolving scope of big data scholarship, we focus on foundational issues for framing and engaging in research. We ground our recommendations in the context of big data created through data sharing across and within the stages of the continuum of the education and training of health professionals. Ultimately, the goal of this statement is to support a culture of trust and quality for big data research to deliver on its promises for health professions education (HPE) and the health of society. Based on expert consensus and review of the literature, we report 19 recommendations in (1) framing scholarship and research through research, (2) considering unique ethical practices, (3) governance of data sharing collaborations that engage stakeholders, (4) data sharing processes best practices, (5) the importance of knowledge translation, and (6) advancing the quality of scholarship through multidisciplinary collaboration. The recommendations were modified and refined based on feedback from the 2022 Ottawa Conference attendees and subsequent public engagement. Adoption of these recommendations can help HPE scholars share data ethically and engage in high impact big data scholarship, which in turn can help the field meet the ultimate goal: high-quality education that leads to high-quality healthcare. [ABSTRACT FROM AUTHOR]

Objective: The impact of hard-to-heal wounds extends beyond traditional clinical metrics, negatively affecting a patient's health-related quality of life (HRQoL). Yet treatment outcomes are seldom measured from the patient's perspective. The purpose of the present study was to perform in-depth qualitative interviews with patients diagnosed with varying types of hard-to-heal wounds to identify outcomes important to them. Method: Participants were recruited from wound care clinics in Canada, Denmark, the Netherlands and the US, and were included if they had a hard-to-heal wound (i.e., lasting ≥3 months), were aged ≥18 years, and fluent in English, Dutch or Danish. Qualitative interviews took place between January 2016 and March 2017. An interpretive description qualitative approach guided the data analysis. Interviews were audio-recorded, transcribed and coded line-by-line. Codes were categorised into top-level domains and themes that formed the final conceptual framework. Results: We performed 60 in-depth interviews with patients with a range of wound types in different anatomic locations that had lasted from three months to 25 years. Participants described outcomes that related to three top-level domains and 13 major themes: wound (characteristics, healing); HRQoL (physical, psychological, social); and treatment (cleaning, compression stocking, debridement, dressing, hyperbaric oxygen, medication, suction device, surgery). Conclusion: The conceptual framework developed as part of this study represents the outcome domains that mattered the most to the patients with hard-to-heal wounds. Interview quotes were used to generate items that formed the WOUND-Q scales, a patient-reported outcome measure for patients with hard-to-heal wounds. [ABSTRACT FROM AUTHOR]

Triage, the first step in the assessment of emergency department patients, occurs in a highly dynamic environment that functions under constraints of time, physical space, and patient needs that may exceed available resources. Through triage, patients are placed into one of a limited number of categories using a subset of diagnostic information. To facilitate this task and standardize the triage decision process, triage guidelines have been implemented. However, these protocols are interpreted differently by highly experienced (expert) nurses and less experienced (novice) nurses. This study investigates the process of triage; the factors that influence triage decision-making, and how the guidelines are used in the process. Using observations and semi-structured interviews of triage nurses, data was collected in the pediatric emergency department of a large Canadian teaching hospital. Results show that in emergency situations (1) triage decisions were often non-analytic and based on intuition, particularly with increasing expertise, and (2) guidelines were used differently by nurses during the triage process. These results suggest that explicit guideline information becomes internalized and implicitly used in emergency triage practice as nurses gain experience. Implications of these results for nursing education and training, and guideline development for emergency care are discussed.

Patient‐reported outcome measures (PROMs) for chronic wounds mainly focus on specific types of wounds. Our team developed the WOUND‐Q for use with all types of wounds in any anatomic location. We conducted 60 concept elicitation interviews with patients in Canada, Denmark, the Netherlands, and the United States. Analysis identified concepts of interest to patients and scales were formed and refined through cognitive interviews with 20 patients and input from 26 wound care experts. Scales were translated into Danish and Dutch. An international field‐test study collected data from 881 patients (1020 assessments) with chronic wounds. Rasch measurement theory (RMT) analysis was used to refine the scales and examine psychometric properties. RMT analysis supported the reliability and validity of 13 WOUND‐Q scales that measure wound characteristics (assessment, discharge, and smell), health‐related quality of life (life impact, psychological, sleep impact, and social), experience of care (information, home care nurses, medical team, and office staff), and wound treatment (dressing and suction device). The WOUND‐Q can be used to measure outcomes in research and clinical practice from the perspective of patients with any type of wound. [ABSTRACT FROM AUTHOR]

Background: Generic preference-based measures (PBM), though commonly used, may not be optimal for use in economic evaluations of breast cancer interventions. No breast cancer-specific PBM currently exists, and the generic PBMs fail to capture the unique concerns of women with breast cancer (e.g., body image, appearance, treatment-specific adverse effects). Hence, the objective of this study was to develop a breast cancer-specific PBM, the BREAST-Q Utility module.Methods: Women diagnosed with breast cancer (stage 0-4, any treatment) were recruited from two tertiary hospitals in Canada and one in the US. The study followed an exploratory sequential mixed methods approach, whereby semi-structured interviews were conducted and at the end of the interview, participants were asked to list their top five health-related quality of life (HRQOL) concerns and to rate the importance of each item on the BREAST-Q. Interviews were audio-recorded, transcribed verbatim, and coded. Constant comparison was used to refine the codes and develop a conceptual framework. Qualitative and quantitative data were triangulated to develop the content of the Utility module  that was refined through 2 rounds of cognitive debriefing interviews with women diagnosed with breast cancer and feedback from experts.Results: Interviews were conducted with 57 women aged 55 ± 10 years. A conceptual framework was developed from 3948 unique codes specific to breasts, arms, abdomen, and cancer experience. Five top-level domains were HRQOL (i.e., physical, psychological, social, and sexual well-being) and appearance. Data from the interviews, top 5 HRQOL concerns, and BREAST-Q item ratings were used to inform dimensions for inclusion in the Utility module. Feedback from women with breast cancer (N = 9) and a multidisciplinary group of experts (N = 27) was used to refine the module. The field-test version of the HSCS consists of 10 unique dimensions. Each dimension is measured with 1 or 2 candidate items that have 4-5 response levels each.Conclusion: The field-test version of the BREAST-Q Utility module was derived from extensive patient and expert input. This comprehensive approach ensured that the content of the Utility module is relevant, comprehensive, and includes concerns that matter the most to women with breast cancer. [ABSTRACT FROM AUTHOR]

Summary: Background: Psychosocial concerns represent important outcomes in studies of treatments for acne and acne scarring. Also important, but largely overlooked, is the concept of appearance. Objectives: To design an acne‐specific patient‐reported outcome measure for acne and acne scarring. Methods: We used a mixed‐methods approach. Phase I involved 21 patient interviews that were audio‐recorded, transcribed and coded. Concepts were identified and developed into scales that were refined through 10 cognitive interviews and input from 16 clinical experts. Phase II involved data collection at hospital and community‐based dermatology clinics in Canada and the U.S.A. Eligible participants were aged 12 years and older with acne and/or acne scars on the face, chest and/or back. Rasch Measurement Theory (RMT) analyses were performed to examine psychometric properties. Results: Phase I led to the development of seven scales that measure appearance of facial skin, acne (face, chest and back) and acne scars, acne‐specific symptoms and appearance‐related distress. In phase II, 256 patients completed the ACNE‐Q. RMT analysis provided evidence that the items of each scale worked together conceptually and statistically. Most participants scored within the range of measurement for each scale (81·9–93·1%). Reliability was high, with person separation index values and Cronbach alpha values > 0·90 for the appearance scales, ≥ 0·87 for appearance‐related distress and ≥ 0·75 for symptoms. Worse scores on appearance scales correlated with worse symptom scores and more appearance‐related distress. Conclusions: The ACNE‐Q is a rigorously developed instrument that can be used to measure appearance and other patient‐centred concerns. What's already known about this topic? Acne is a common dermatological condition that can have an important impact on psychosocial function.Current patient‐reported outcome measures specific to acne focus mostly on measuring psychological and social impact. What does this study add? The ACNE‐Q provides a set of independently functioning scales that measure appearance of facial, back and chest acne, acne scarring and facial skin.Additional scales measure appearance‐related distress and acne symptoms. What are the clinical implications of this work? ACNE‐Q provides the dermatology community with a rigorously developed patient‐reported measure for acne that can be applied in clinical trials, research and patient care.The measurement of appearance by ACNE‐Q scales is more comprehensive than in other instruments providing important information on appearance of their acne and/or acne scars from the patient perspective. Respond to this article Linked Comment: Gabes. Br J Dermatol 2019; 181:1121–1122. Plain language summary available online [ABSTRACT FROM AUTHOR]

Background: Recent systematic reviews have identified that current patient-reported outcome instruments have content limitations when used to measure change following bariatric surgery. The aim of this study was to measure change after bariatric surgery using the BODY-Q, a PRO instrument designed for weight loss and body contouring.Methods: The BODY-Q is composed of 18 independently functioning scales and an obesity-specific symptom checklist that measure appearance, health-related quality of life (HR-QOL) and experience of health-care. The sample for this study included patients who were exploring or seeking bariatric surgery in Hamilton (Canada) at the time of the BODY-Q field-test study and who agreed to further contact from the research team. These patients were invited to complete 12 BODY-Q scales and the symptom checklist between 7 June 2016 and 29 November 2016. Data were collected online (REDCap) and via postal surveys. Clinical change was measured using paired t-tests with effect sizes and standardized response means.Results: The survey was completed by 58 of 89 (65%) pre-bariatric participants from the original BODY-Q field-test sample. The non-participants did not differ from participants in terms of age, gender, ethnicity, BMI or initial BODY-Q scale scores. Participants who had undergone bariatric surgery had a mean BMI of 49 (SD = 7) at time 1 and 35 (SD = 7) at time 2. Time since bariatric surgery was on average 2 years (SD = 0.5) (range 0.4 to 3 years). Percentage total weight loss ranged from 12 to 51 (mean 31, SD = 9). The difference in the proportion of patients to report an obesity-specific symptom on the BODY-Q checklist was significantly lower at follow-up for 5 of 10 symptoms. Participants improved on BODY-Q scales measuring appearance (of abdomen, back, body, buttocks, hips/outer thighs, inner thigh), body image and physical function (p < 0.001 on paired t-tests) and social function (p = 0.002 on paired t-test). These changes were associated with moderate to large effect sizes (0.60 to 2.29) and standardized response means (0.47 to 1.35).Conclusions: The BODY-Q provides a set of independently functioning scales that measure issues important to patients who undergo weight loss. BODY-Q scales were responsive to measuring clinical change associated with weight loss 2 years after bariatric surgery. [ABSTRACT FROM AUTHOR]

Many women with early-stage breast cancer choose breast reconstruction following mastectomy with the goal to improve physical and psychological quality of life. Breast reconstruction procedures vary in surgical complexity, types of postsurgical complications, and time to recovery, all of which can affect a women's well-being. Although there is a growing body of literature on the satisfaction with aesthetic outcomes following breast reconstruction, there is little research addressing the recovery process. This qualitative study explores woman's physical and emotional recovery experiences. Findings may be useful for improving educational and counseling services for women who undergo breast cancer reconstructive surgeries. [ABSTRACT FROM PUBLISHER]

Summary: Acne is a common skin condition that affects many adolescents and adults. This study, from Canada and the USA, aimed to create a patient‐reported outcome measure (i.e., questionnaire) called the ACNE‐Q. Patient‐reported outcome measures have many uses, for example they can be used before and after a treatment to assess any improvement in a patient's symptoms, or their quality of care. The ACNE‐Q measures outcomes that matter to people with acne. To develop the ACNE‐Q, the authors interviewed 21 people with acne and acne scars to identify their concerns. From this information, the authors drafted seven scales that measure appearance (of facial, chest and back acne, acne scars and facial skin), symptoms and appearance‐related distress. The scales were shown to 10 patients and 16 experts to make sure they were easy to understand and covered the issues that matter the most to patients. The authors then tested the ACNE‐Q in a sample of 256 patients with acne and/or acne scars. The research team found that the seven scales worked well (were reliable and valid). The ACNE‐Q can now be used in research to measure change in appearance, symptoms and distress following treatment for acne and/or acne scars. The ACNE‐Q can also be used by healthcare providers with their patients to identify concerns, and in shared decision‐making. Linked Article: Klassen et al. Br J Dermatol 2019; 181:1207–1215 [ABSTRACT FROM AUTHOR]

Background: The BODY-Q Chest module is a patient-reported outcome (PRO) instrument that measures satisfaction with how the chest (10 items) and nipples (5 items) look. This PRO instrument was previously field tested in an international sample of people seeking treatment for gynecomastia (n = 174), weight loss (n = 224), and chest masculinization (n = 341)., Objectives: The aim of this study was to examine the psychometric performance of the BODY-Q Chest module in a new chest masculinization surgery sample., Methods: Data were collected from patients attending a private plastic surgery outpatient clinic in Canada between January 2018 and June 2019. Rasch measurement theory analysis was used to examine how the scales performed psychometrically., Results: The sample provided 266 assessments (115 preoperative, 151 postoperative). All items had ordered thresholds, providing evidence that the 4 response options for each scale worked as expected. Item fit was within ±2.5 for all items, with all Bonferroni adjusted chi-square values nonsignificant. The data for the chest (χ2(20) = 18.72, P = 0.54) and nipples (χ 2(10) = 12.28, P = 0.27) scales fit the requirements of the Rasch model. Reliability was high with person separation index and Cronbach's α values of ≥0.95 for the chest and ≥0.87 for the nipple scales, respectively. More depressive symptoms on the Patient Health Questionnaire-9 and lower health-related quality of life scales were weakly correlated with worse scores on the chest and nipple scales (P < 0.001)., Conclusions: The BODY-Q Chest module was shown to be scientifically sound in an independent sample of patients seeking chest masculinization surgery., (© 2020 The Aesthetic Society. Reprints and permission: journals.permissions@oup.com.)

In 2008, approximately 500,000 women in the United States underwent breast surgery, either cosmetic surgery or reconstruction following mastectomy for breast cancer. There is a growing body of literature on women's motivations to have these types of surgical procedures and on satisfaction with the aesthetic outcomes, but little is known about the information needs and expectations of women who choose to undergo these procedures. Therefore, the purpose of this qualitative study was to gain a better understanding of the informational needs of women who underwent breast augmentation, breast reduction, or breast reconstruction following breast cancer surgery.