Isolating the Drivers of Racial Inequities in Prostate Cancer Treatment.

BACKGROUND: Black individuals in the United States are less likely than White individuals to receive curative therapies despite a 2-fold higher risk of prostate cancer death. While research has described treatment inequities, few studies have investigated underlying causes. METHODS: We analyzed a cohort of 40,137 Medicare beneficiaries (66 and older) linked to the Surveillance Epidemiology and End Results (SEER) cancer registry who had clinically significant, non-metastatic (cT1-4N0M0, grade group 2-5) prostate cancer (diagnosed 2010-2015). Using the Kitagawa-Oaxaca-Blinder decomposition, we assessed the contributions of patient health and health care delivery on the racial difference in localized prostate cancer treatments (radical prostatectomy or radiation). Patient health consisted of comorbid diagnoses, tumor characteristics, SEER site, diagnosis year, and age. Health care delivery was captured as a prediction model with these health variables as predictors of treatment, reflecting current treatment patterns. RESULTS: A total of 72.1% and 78.6% of Black and White patients received definitive treatment, respectively, a difference of 6.5 percentage points. An estimated 15% [95% confidence interval (CI): 6-24] of this treatment difference was explained by measured differences in patient health, leaving the remaining estimated 85% (95% CI: 74-94) attributable to a potentially broad range of health care delivery factors. Limitations included insufficient data to explore how specific health care delivery factors, including structural racism and social determinants, impact differential treatment. CONCLUSIONS: Our results show the inadequacy of patient health differences as an explanation of the treatment inequity. IMPACT: Investing in studies and interventions that support equitable health care delivery for Black individuals with prostate cancer will contribute to improved outcomes.

Prostate cancer screening in African American men: a review of the evidence.

BACKGROUND: Prostate cancer is the most diagnosed cancer in African American men, yet prostate cancer screening regimens in this group are poorly guided by existing evidence, given underrepresentation of African American men in prostate cancer screening trials. It is critical to optimize prostate cancer screening and early detection in this high-risk group because underdiagnosis may lead to later-stage cancers at diagnosis and higher mortality while overdiagnosis may lead to unnecessary treatment. METHODS: We performed a review of the literature related to prostate cancer screening and early detection specific to African American men to summarize the existing evidence available to guide health-care practice. RESULTS: Limited evidence from observational and modeling studies suggests that African American men should be screened for prostate cancer. Consideration should be given to initiating screening of African American men at younger ages (eg, 45-50 years) and at more frequent intervals relative to other racial groups in the United States. Screening intervals can be optimized by using a baseline prostate-specific antigen measurement in midlife. Finally, no evidence has indicated that African American men would benefit from screening beyond 75 years of age; in fact, this group may experience higher rates of overdiagnosis at older ages. CONCLUSIONS: The evidence base for prostate cancer screening in African American men is limited by the lack of large, randomized studies. Our literature search supported the need for African American men to be screened for prostate cancer, for initiating screening at younger ages (45-50 years), and perhaps screening at more frequent intervals relative to men of other racial groups in the United States.

Protocol of the Comparison of Intravesical Therapy and Surgery as Treatment Options (CISTO) study: a pragmatic, prospective multicenter observational cohort study of recurrent high-grade non-muscle invasive bladder cancer.

BACKGROUND: Bladder cancer poses a significant public health burden, with high recurrence and progression rates in patients with non-muscle-invasive bladder cancer (NMIBC). Current treatment options include bladder-sparing therapies (BST) and radical cystectomy, both with associated risks and benefits. However, evidence supporting optimal management decisions for patients with recurrent high-grade NMIBC remains limited, leading to uncertainty for patients and clinicians. The CISTO (Comparison of Intravesical Therapy and Surgery as Treatment Options) Study aims to address this critical knowledge gap by comparing outcomes between patients undergoing BST and radical cystectomy. METHODS: The CISTO Study is a pragmatic, prospective observational cohort trial across 36 academic and community urology practices in the US. The study will enroll 572 patients with a diagnosis of recurrent high-grade NMIBC who select management with either BST or radical cystectomy. The primary outcome is health-related quality of life (QOL) at 12 months as measured with the EORTC-QLQ-C30. Secondary outcomes include bladder cancer-specific QOL, progression-free survival, cancer-specific survival, and financial toxicity. The study will also assess patient preferences for treatment outcomes. Statistical analyses will employ targeted maximum likelihood estimation (TMLE) to address treatment selection bias and confounding by indication. DISCUSSION: The CISTO Study is powered to detect clinically important differences in QOL and cancer-specific survival between the two treatment approaches. By including a diverse patient population, the study also aims to assess outcomes across the following patient characteristics: age, gender, race, burden of comorbid health conditions, cancer severity, caregiver status, social determinants of health, and rurality. Treatment outcomes may also vary by patient preferences, health literacy, and baseline QOL. The CISTO Study will fill a crucial evidence gap in the management of recurrent high-grade NMIBC, providing evidence-based guidance for patients and clinicians in choosing between BST and radical cystectomy. The CISTO study will provide an evidence-based approach to identifying the right treatment for the right patient at the right time in the challenging clinical setting of recurrent high-grade NMIBC. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03933826. Registered on May 1, 2019.

Determining clinical perspectives and strategies for improving enrollment of minoritized communities in prostate cancer clinical trials.

BACKGROUND: Black men and other minoritized populations have represented 4-5% or less of participants in most practice-informing clinical trials. This study sought to assess the knowledge, attitudes, and practices of clinicians around equity and inclusion in prostate cancer clinical trial initiatives in the United States. METHODS: An anonymous, web-based questionnaire was administered via REDCap (Research Electronic Data Capture) with questions focused on inclusivity of minoritized populations with respect to race and ethnicity in prostate cancer clinical trials research. The survey link was distributed across the United States via several professional organizations, prostate cancer groups, and social media. Responses were analyzed both quantitatively (descriptive statistics) and qualitatively (thematic analysis). RESULTS: Overall, 131 respondents completed the survey (70% self-identified as White, 17% as Asian, and 6% as Black). Most respondents practiced in an urban setting (89%). Of those who engaged in outreach with minoritized communities during the trial design process, 69% observed improved enrollment of minoritized populations. However, 18% of respondents noted that outreach alone does not overcome existing structural barriers to participation in clinical trials. Thematic analysis identified four key areas to address for improving equity: structural, health system, trial-/study-specific, and relationship-/engagement-related factors. CONCLUSION: Study participants demonstrated a knowledge of the importance of improving equity in prostate cancer clinical trials research. Designing trials that reduce issues associated with access and improving community outreach were emphasized as key focus areas for reducing health disparities in prostate cancer clinical trials research.

Inequities in Definitive Treatment for Localized Prostate Cancer Among Those With Clinically Significant Mental Health Disorders.

INTRODUCTION: Patients with mental health disorders are at risk for receiving inequitable cancer treatment, likely resulting from various structural, social, and health-related factors. This study aims to assess the relationship between mental health disorders and the use of definitive treatment in a population-based cohort of those with localized, clinically significant prostate cancer. METHODS: We conducted a cohort study analysis in SEER (Surveillance, Epidemiology, and End Results)-Medicare (2004-2015). History of a mental health disorder was defined as presence of specific ICD (International Classification of Diseases)-9 or ICD-10 diagnostic codes in the 2 years preceding cancer diagnosis. Descriptive statistics were performed using Wilcoxon rank-sum and χ2 testing. Multivariable logistic regression was used to evaluate the relationship between mental health disorders and definitive treatment utilization (defined as surgery or radiation). RESULTS: Of 101,042 individuals with prostate cancer, 7,945 (7.8%) had a diagnosis of a mental health disorder. They were more likely to be unpartnered, have a lower socioeconomic status, and less likely to receive definitive treatment (61.8% vs 68.2%, P < .001). Definitive treatment rates were >66%, 62.8%, 60.3%, 58.2%, 54.3%, and 48.1% for post-traumatic stress disorder, depressive disorder, bipolar disorder, anxiety disorder, substance abuse disorder, and schizophrenia, respectively. After adjusting for age, race and ethnicity, marital status and socioeconomic status, history of a mental health disorder was associated with decreased odds of receiving definitive treatment (OR 0.74, 95% CI 0.66-0.83). CONCLUSIONS: Individuals with mental health disorders and prostate cancer represent a vulnerable population; careful attention to clinical and social needs is required to support appropriate use of beneficial treatments.

Attitudes Among Society of Women in Urology Members Toward Dobbs v. Jackson Women's Health Organization.

OBJECTIVE: To evaluate attitudes of women in urology regarding the Supreme Court ruling Dobbs v. Jackson Women's Health Organization, including impacts on personal/professional decision-making and the urology workforce. METHODS: An IRB-exempt survey including Likert questions on participant views and free text questions was distributed to 1200 members of the Society of Women in Urology on 9/2/2022. Participants were medical students, urology residents, fellows, and practicing/retired urologists over 18. Responses were anonymous and aggregated. Quantitative responses were characterized with descriptive statistics and free-text responses were analyzed using thematic mapping. To complement this analysis, urologist density was mapped by county using 2021 National Provider Identifier data. State abortion laws were categorized based on Guttmacher Institute data on 10/20/2022. Data were analyzed using logistic regression, Poisson regression, and multiple linear regression. RESULTS: 329 respondents completed the survey. 88% disagree/strongly disagree with the Dobbs ruling. 42% of trainees may have changed their rank list if current abortion laws existed during their match. 60% of respondents said Dobbs will impact where they choose their next job. 61.5% of counties had zero urologists in 2021, 76% of which were in states with restrictive abortion laws. Urologist density was inversely associated with abortion law restrictiveness compared with the most protective counties. CONCLUSION: The Dobbs ruling will significantly impact the urology workforce. Trainees may change how they rank programs in states with restrictive abortion laws, and urologists may consider abortion laws when choosing jobs. Restrictive states are at higher risk for worsening access to urologic care.

Primary Care Physician Perspectives on the Influence of Patient Values, Health Priorities, and Preferences on Clinical Decision-Making for Complex Patients with Multimorbidity: A Qualitative Study.

Introduction: The prevalence of patients with multimorbidity (ie, multiple chronic conditions) is increasing. Clinical decision-making guided by patients' values, health priorities and goals, and treatment preferences is particularly important in the context of interacting diseases and psychosocial needs. Physicians face challenges incorporating patient perspectives into care plans. We examined primary care physician (PCP) views on the influence of patients' values, health priorities and goals, and preferences on clinical decisions for patients with multimorbidity and increased psychosocial complexity. Methods: We conducted semi-structured telephone interviews with 23 PCPs within patient-centered medical home teams in a nationally integrated health system in the United States between May and July 2020. Data were analyzed via thematic analysis with deductive and inductive coding. Results: Three major themes emerged: 1. Patient personal values were rarely explicitly discussed in routine clinical encounters but informed more commonly discussed concepts of patient priorities, goals, and preferences; 2. Patient values, health priorities and goals, and preferences were sources of divergent views about care plans between healthcare teams, patients, and families; 3. Physicians used explicit strategies to communicate and negotiate about patient values, health priorities and goals, and preferences when developing care plans, including trust-building; devoting extra effort to individualizing care; connecting patient values to healthcare recommendations; deliberate elicitation and acknowledgement of patient concerns; providing "space" for patient perspectives; incorporating family into care planning; pairing physician to patient priorities; and collaborative teamwork. Conclusion: Primary care physicians perceive patient values, health priorities and goals, and preferences as influential during clinical decision-making for complex patients with multimorbidity. Participants used concrete strategies to negotiate alignment of these aspects when physician-patient divergence occurred. While rarely discussed directly in clinical encounters, personal values affected patient health priorities, goals, and preferences during care planning, suggesting a clinical role for more deliberate elicitation and discussion of patient values for this population.

A mixed method approach to understanding the impact of COVID-19 on patients with or at risk for aortic dissection.

Aortic dissection (AD) is a life-threatening rare disease that occurs as a spontaneous tear in the wall of the aorta. Survivors of AD go on to have a chronic disease process that requires lifelong follow-up and management. Although the COVID-19 pandemic has strained health systems and impacted practice in the United States, the effects of these impacts on people living with or at risk for AD is not well understood. This mixed methods project examined the experiences of people in the AD community during the COVID-19 pandemic between March and October 2020. Results reveal that the AD community lacked clear guidance on the role aortic health status plays in COVID-19 risk and experienced significant disruptions in aortic healthcare. At the same time, the new expansion in access to medical care with telehealth conferred unforeseen benefits in the form of reduced barriers for access to specialized aortic health care.

An assessment of the current medical management of thoracic aortic disease: A patient-centered scoping literature review.

Thoracic aortic aneurysm and dissection are complex diagnoses that require management by multidisciplinary providers using a variety of medical therapies, surgical interventions, and lifestyle modifications. Pharmacological agents, such as ß-blockers (atenolol) and angiotensin II type 1 receptor blockers (losartan), have been mainstay treatments for several years, and research from the past decade has continued to evaluate these and other medication classes to further improve patient morbidity and mortality. Combination ß- and renin-aldosterone-angiotensin blockade, statins, metformin, antioxidants, and vitamins have been evaluated as therapeutics in both thoracic and abdominal aortic aneurysms, as well as the effects of various antibiotics (ie, fluoroquinolones and tetracyclines) and benefits of lifestyle modifications (eg, diet and exercise) and enhanced patient-centered care and treatment adherence. In addition, as our understanding of the genetic, biochemical, and pathophysiological mechanisms behind these diseases expands, so do potential targets for future therapeutic research (eg, interleukins, matrix metalloproteases, and mast cells). This review incorporates the major meta-analyses, systematic and generalized reviews, and clinical trials published from 2010 through 2021 that focus on these topics in thoracic aortic aneurysms (and abdominal aneurysms when thoracic literature is scarce). Several key ongoing clinical trials, case studies, and in vivo/in vitro studies are also mentioned. Furthermore, we discuss current gaps in the literature and the abundance of clinical evidence for some interventions in abdominal aneurysms with few thoracic correlates, thus indicating a need for investigation of these subjects in the latter.

Lived experiences of people with or at risk for aortic dissection: A qualitative assessment.

Aortic dissection (AD) is a life-changing event that is often accompanied by a loss of normal quality of life. Survivors of AD go on to have a chronic disease that requires lifestyle modification, medical management, and surgical repair of the aorta. Clinical care includes multiple disciplines, health care settings, and often different geographic locations. This qualitative assessment examined the experiences of people with and at risk for AD. The following four themes emerged: "unnecessary drama" at diagnosis, unmet needs for information and support, the burden of self-advocacy and care coordination, and living with unaddressed mental health impacts. Our findings inform recommendations to advance patient-centered care delivery for individuals with and at risk for AD, improving communication of timely and relevant information, and an approach to care that acknowledges the whole person in clinical decision making.

The Aortic Dissection Collaborative: Methods for building capacity for patient-centered outcomes research in the aortic dissection community.

Understanding what matters most to patients can help guide research in a direction that is best situated to provide evidence that is responsive to their core concerns. This can better inform the treatment decision-making process for patients and their physicians. The Aortic Dissection (AD) Collaborative built a collaborative AD research infrastructure involving patients and other stakeholders to facilitate patient-centered outcomes research training, support, and networking among those affected by AD. Two surveys and semi-structured interviews were conducted between January and October 2020 to gather information from people with and at risk for AD and their family members to better understand their experiences and needs. Discussion of survey and interview results were then articulated as seven key topics for future research to meet the needs of the AD community. Working groups were assembled to address each of the key topics. The groups conducted landscape reviews that were focused on providing guidance for future research that directly addresses the needs identified by the AD community. Recommendations for future research generated by the working groups were compiled by the Aortic Dissection Collaborative. From these recommendations, the Aortic Dissection Collaborative advisors and stakeholders identified high-priority research questions. The research questions form the basis for a third survey, disseminated to the Virtual Research Network between November 2021 and February 2022. Final analysis of the survey will identify top ranked research questions and assess willingness to participate. These results will inform the development of future patient-centered outcomes research and comparative effectiveness research proposals.

Patient decision-making in symptomatic gallbladder disease.

BACKGROUND: One in five people with gallstones develop symptoms (~ 13 million in the US), yet only a fraction undergo cholecystectomy. The frequency of and factors associated with patients choosing medical management for gallbladder disease are not well understood. The goal of this study was to assess patient decision-making regarding cholecystectomy, experiences with medical management, and interest in a clinical trial comparing cholecystectomy with medical management. METHODS: We conducted a cross-sectional survey from January 2020 through May 2020 using Amazon's crowdsourcing platform, MTurk. After a brief screening survey to determine gallbladder disease history and cholecystectomy status, eligible users without prior cholecystectomy were invited to complete the full survey for US $2.50. RESULTS: There were 148 responses included in analysis (93.7% of attempted). Participants were 54% female with a mean age of 36.2 (SD 11.3) years. 36% of participants had used medications or supplements to manage their symptoms with 17% using lecithin and 22% using ursodeoxycholic acid (Ursodiol®). 85% attempted lifestyle modifications to manage symptoms. Surgery was recommended for 60% of which 43% reported planning cholecystectomy. Among those recommended operation, most common reasons for pursuing were symptoms (50%) and symptoms interfering with care of family (42%), while most common reasons for not pursuing were risks of surgery/anesthesia (56%), ongoing medical management (50%), and symptom tolerance (38%). 67% reported willingness to participate in a clinical trial comparing medical management to cholecystectomy. CONCLUSION: A significant portion of patients with symptomatic gallbladder disease choose not to undergo cholecystectomy. One of the most common reasons for avoiding surgery was the use of alternative therapies, despite limited evidence to support their use. The lack of prospective comparison of cholecystectomy to medical therapies for the management of gallbladder disease, along with patient interest, support the need for a clinical trial.

Patient and public involvement in the design and conduct of a large, pragmatic observational trial to investigate recurrent, high-risk non-muscle-invasive bladder cancer.

BACKGROUND: Patient-centered approaches to research design are particularly important for diseases with complex treatment decision-making, such as recurrent, high-grade non-muscle-invasive bladder cancer (NMIBC). The objective of this article is to describe patient and public involvement (PPI) in designing a large, pragmatic observational trial and to articulate barriers, challenges, and lessons learned for future design. METHODS: Through multistakeholder involvement, a large, pragmatic observational trial was designed to investigate the outcomes of high-risk, recurrent NMIBC, and it was titled Comparison of Intravesical Therapy and Surgery as Treatment Options for Bladder Cancer (CISTO). CISTO's design used the Guidance for Reporting Involvement of Patients and the Public 2 reporting checklist for PPI and built on prior engagement infrastructure in partnership with the Bladder Cancer Advocacy Network. RESULTS: CISTO's PPI began with research prioritization to identify the highest priority questions facing patients with NMIBC. A pragmatic observational study design was selected and refined through stakeholder input. PPI included patients and caregivers organized into an advocate advisory board and clinicians, researchers, payers, and industry representatives organized into an external advisory board. An engagement plan was created to define the stages of PPI and the level and nature of the involvement of each group. PPI was measured quantitatively and qualitatively through evaluation surveys and iterative feedback from board members, with changes made for continuous improvement. CONCLUSIONS: Through intentional PPI, CISTO aims to produce pragmatic and generalizable results that will allow patients to make informed decisions for recurrent, high-risk NMIBC based on their personal experiences. LAY SUMMARY: Involving patients and other stakeholders in research ensures that it reflects the outcomes that matter most to them. This is especially important when research focuses on conditions in which patients face difficult decisions about treatment options. This article describes the key role that stakeholders played in shaping the Comparison of Intravesical Therapy and Surgery as Treatment Options for Bladder Cancer (CISTO) study. It compares treatments for recurrent noninvasive bladder cancer and describes how stakeholders were engaged to design and develop the study and the practices that supported their involvement.

A learning health systems approach to integrating electronic patient-reported outcomes across the health care organization.

INTRODUCTION: Foundational to a learning health system (LHS) is the presence of a data infrastructure that can support continuous learning and improve patient outcomes. To advance their capacity to drive patient-centered care, health systems are increasingly looking to expand the electronic capture of patient data, such as electronic patient-reported outcome (ePRO) measures. Yet ePROs bring unique considerations around workflow, measurement, and technology that health systems may not be poised to navigate. We report on our effort to develop generalizable learnings that can support the integration of ePROs into clinical practice within an LHS framework. METHODS: Guided by action research methodology, we engaged in iterative cycles of planning, acting, observing, and reflecting around ePRO use with two primary goals: (1) mobilize an ePRO community of practice to facilitate knowledge sharing, and (2) establish guidelines for ePRO use in the context of LHS practice. Multiple, emergent data collection activities generated generalizable guidelines that document the tangible best practices for ePRO use in clinical care. We organized guidelines around thematic areas that reflect LHS structures and stakeholders. RESULTS: Three core thematic areas (and 24 guidelines) emerged. The theme of governance reflects the importance of leadership, knowledge management, and facilitating organizational learning around best practice models for ePRO use. The theme of integration considers the intersection of workflow, technology, and human factors for ePROs across areas of care delivery. Lastly, the theme of reporting reflects critical considerations for curating data and information, designing system functions and interactions, and presentation of ePRO data to support the translation of knowledge to action. CONCLUSIONS: The guidelines produced from this work highlight the complex, multidisciplinary nature of implementing change within LHS contexts, and the value of action research approaches to enable rapid, iterative learning that leverages the knowledge and experience of communities of practice.

StayHome: A FHIR-Native Mobile COVID-19 Symptom Tracker and Public Health Reporting Tool.

As the COVID-19 pandemic continues to unfold and states experience the impacts of reopened economies, it is critical to efficiently manage new outbreaks through widespread testing and monitoring of both new and possible cases. Existing labor-intensive public health workflows may benefit from information collection directly from individuals through patient-reported outcomes (PROs) systems. Our objective was to develop a reusable, mobile-friendly application for collecting PROs and experiences to support COVID-19 symptom self-monitoring and data sharing with appropriate public health agencies, using Fast Healthcare Interoperability Resources (FHIR) for interoperability. We conducted a needs assessment and designed and developed StayHome, a mobile PRO administration tool. FHIR serves as the primary data model and driver of business logic. Keycloak, AWS, Docker, and other technologies were used for deployment. Several FHIR modules were used to create a novel "FHIR-native" application design. By leveraging FHIR to shape not only the interface strategy but also the information architecture of the application, StayHome enables the consistent standards-based representation of data and reduces the barrier to integration with public health information systems. FHIR supported rapid application development by providing a domain-appropriate data model and tooling. FHIR modules and implementation guides were referenced in design and implementation. However, there are gaps in the FHIR specification which must be recognized and addressed appropriately. StayHome is live and accessible to the public at https://stayhome.app. The code and resources required to build and deploy the application are available from https://github.com/uwcirg/stayhome-project.

"Help me figure this out": Qualitative explorations of patient experiences with cancer pathology reports.

OBJECTIVE: For patients with a new cancer diagnosis, the pathology report is a critical tool to support diagnosis and decision-making, yet they are designed for providers, not patients. We sought to qualitatively explore patients' experiences receiving and interpreting pathology reports for breast and colorectal cancers. METHODS: We conducted four focus groups with patients (n = 23) who had received diagnostic or surgical pathology reports for breast cancer, colorectal cancer or polypectomy. Focus groups discussed patients' experiences with pathology reports and recommendations for improving the patient-centeredness of report design. Focus groups were transcribed and thematic analysis was used to explore patient perspectives. RESULTS: Participants described experiences with pathology reports that were fraught with confusion and variability. Three central themes were identified related to how 1) the experience receiving the pathology report, 2) the pathology report language, and 3) the format of pathology reports all influence patient understanding and ability to engage in treatment decision-making. CONCLUSION: Due to their complex medical language and challenging framing, traditional pathology reports can contribute to the confusion and uncertainty patients experience as they navigate a new cancer diagnosis.

Improving the impact of clinical documentation through patient-driven co-design: experiences with cancer pathology reports.

OBJECTIVE: With the unprecedented rise of patient access to clinical documentation through electronic health records, there is a need for health systems to understand best practices for redesigning clinical documentation to support patient needs. This study used an experience-based co-design approach to inform the redesign of cancer pathology reports to improve their patient-centeredness and impact on patient engagement. MATERIALS AND METHODS: Multiple methods for data collection and stakeholder engagement were used, including Delphi prioritisation with breast and colorectal cancer experts (n=78) and focus groups with patients with cancer (n=23) in the Seattle area. Iterative rounds of consensus generation and reflection were used to elicit themes and design recommendations for the development of patient-centred pathology reports on cancer care. RESULTS: Although each cancer type had nuanced elements to consider, common design requirements emerged around two key themes: (1) clinical documentation language should be framed in a way that informs and engages patients, and (2) clinical documentation format should be leveraged to enhance readability and information flow. Study activities illuminated detailed recommendations to improve the patient-centeredness of pathology reports based on patients' and clinicians' lived experience. DISCUSSION: The design requirements that emerged from this study provide a framework that can guide the rapid development of patient-centred pathology reports for all cancer types. Even further, health systems can replicate these methods to guide experience-based co-design of clinical documentation for contexts beyond cancer care. CONCLUSION: This work offers practice-based learnings that can more effectively guide health systems in their clinical documentation redesign efforts.

Use of patient-generated health data across healthcare settings: implications for health systems.

OBJECTIVE: The growing prevalence of chronic conditions requiring changes in lifestyle and at-home self-management has increased interest in and need for supplementing clinic visits with data generated by patients outside the clinic. Patient-generated health data (PGHD) support the ability to diagnose and manage chronic conditions, to improve health outcomes, and have the potential to facilitate more "connected health" between patients and their care teams; however, health systems have been slow to adopt PGHD use in clinical care. MATERIALS AND METHODS: We surveyed current and potential users of PGHD to catalog how PGHD is integrated into clinical care at an academic health center. The survey included questions about data type, method of collection, and clinical uses of PGHD. Current users were asked to provide detailed case studies of PGHD use in research and care delivery. RESULTS: Thirty-one respondents completed the survey. Seventeen individuals contributed detailed case studies of PGHD use across diverse areas of care, including behavioral health, metabolic and gastrointestinal conditions, musculoskeletal/progressive functional conditions, cognitive symptoms, and pain management. Sensor devices and mobile technologies were the most commonly reported platforms for collection. Clinicians and researchers involved in PGHD use cited the potential for PGHD to enhance care delivery and outcomes, but also indicated substantial barriers to more widespread PGHD adoption across healthcare systems. CONCLUSION: The results of our survey illustrate how PGHD is used in targeted areas of one healthcare system and provide meaningful insights that can guide health systems in supporting the widespread use of PGHD in care delivery.