Identity Development and Disruption in Older Adults During COVID-19: A Longitudinal, Mixed-Methods Study.

OBJECTIVES: Disruptive life events, such as the coronavirus disease 2019 (COVID-19) pandemic, may trigger adjustment and revision of older adults' identities. This mixed-methods study explored how older adults perceived their identities changing as a result of the pandemic, and how such identity dynamics related to pandemic-related events and well-being. METHODS: Participants included 2,248 older adults who participated in the longitudinal COVID-19 Coping Study spanning from April/May 2020 to April/May 2021. Mean age was 67.8 years, 70% were women, and 93% were White. We used qualitative thematic analysis to identify the ways the pandemic affected participants' identities. We then investigated the association between identity themes and testing positive for COVID-19, having a friend or family member hospitalized or dying due to COVID-19, or being vaccinated. Finally, we tested whether identity disruption was associated with 12-month trajectories of well-being (including life satisfaction, loneliness, depressive symptoms, anxiety, and self-rated health) using latent growth curve models. RESULTS: Some participants reported positive identity themes, such as rethinking and revising priorities and realization of strength and resilience. Others indicated harmful effects, including identity disruption. Individuals reporting identity disruption had worse well-being at baseline and remained consistently worse over time. DISCUSSION: Findings highlight that identity remains malleable in later life and that stressful events like the COVID-19 pandemic may trigger positive adaptive identity processes, but can also cause identity disruption that is associated with persistently worse well-being over time.

What interventions keep older people out of nursing homes? A systematic review and meta-analysis.

BACKGROUND: Nursing home admission remains a central outcome in many healthcare systems and community-based programs. The objective of this meta-analysis was to determine the efficacy of pharmacological and nonpharmacological interventions in preventing nursing home admission for adults aged 65 years or older. METHODS: MEDLINE, EMBASE, PsycInfo, CINAHL, and the Cochrane Library were all last searched in March 2022 to identify up-to-date eligible studies for the meta-analysis. Two reviewers screened each abstract independently. In instances where reviewers disagreed as to inclusion, all reviewers convened to review the Abstract to come to a consensus decision regarding inclusion. Two reviewers independently collected data from each report. Disagreements were resolved using group consensus. The first author reviewed the narrative descriptions of intervention components to create a categorization scheme for the various interventions evaluated in selected studies. These categorizations were reviewed with the co-authors (second-fifth) and collapsed to create the final classification of intervention type. Study risk of bias was assessed using an instrument developed based on Agency for Healthcare Research & Quality (AHRQ) guidance. Differences between the percentages of participants in treatment versus control arms was the outcome of interest. RESULTS: Two-hundred and eighty-three studies with a total of 203,735 older persons were included in the meta-analysis. Specialty geriatrics care (OR = 0.77, 95% CI, 0.60-0.99), multicomponent interventions (OR = 0.82, 95% CI, 0.67-0.99), and cognitive stimulation (OR = 0.60, 95% CI, 0.38-0.96) were associated with less frequent nursing home admission. Home-based and inpatient/discharge management interventions approached statistical significance but were not associated with reduced institutionalization. CONCLUSIONS: Even in the face of complex care needs, older adults wish to live at home. Effectively disseminating and implementing geriatric care principles across healthcare encounters could achieve a highly valued and preferred outcome in older adulthood: aging in place.

Caring for a Relative With Dementia in Long-Term Care During the COVID-19 Pandemic: A Prospective Longitudinal Study.

Background and Objectives: The coronavirus disease 2019 (COVID-19) pandemic introduced unprecedented threats and disruptions for caregivers of people with dementia living in residential long-term care (LTC) facilities. Qualitative and cross-sectional studies have reported substantial negative effects of the pandemic on dementia caregivers' well-being, but little to no prospective research has examined the impact of COVID-19 on caregiver well-being using pre-pandemic assessments. The present study used longitudinal data from an ongoing randomized controlled trial of a psychosocial intervention to support family caregivers whose relatives had entered LTC. Research Design and Methods: Data collection began in 2016 and continued through 2021. Caregivers (N = 132) completed up to 7 assessments measuring their depressive symptoms, self-efficacy, and burden. Results: Latent growth curve models testing preregistered hypotheses revealed no significant effects of the pandemic on caregiver outcomes on average, though caregivers varied in terms of individual intercepts and slopes. Furthermore, factors such as caregiver-care recipient relationship closeness, care recipient's COVID-19 infection status, and caregivers' ratings of LTC facilities' COVID-19 policies did not significantly moderate trajectories of well-being. Discussion and Implications: Findings highlight the heterogeneity of caregivers' experiences during the pandemic, and suggest caution when interpreting cross-sectional findings on the impacts of the COVID-19 pandemic on caregiver well-being and distress.

Can Technology-Based Social Memory Aids Improve Social Engagement? Perceptions of a Novel Memory Aid for Persons With Memory Concerns.

Social withdrawal and isolation are frequently experienced among people with cognitive impairment, Alzheimer's disease, and Alzheimer's disease related dementias. Few assistive technologies exist to support persons with memory concerns' (PWMC) continuing social engagement. This study aimed to understand PWMC and family caregivers' initial perspectives on the feasibility and utility of a wearable technology-based social memory aid. We recruited 20 dyads, presented the memory aid, and conducted semi-structured interviews from June to August 2020 over Zoom video conferencing. Interviews were transcribed and analyzed using thematic analysis. Overall, participants anticipated the technology could reduce socializing-related stress now and in the future for both members of the care dyad. However, certain features of the memory aid (e.g., visitors must have the app), could limit utility, and participants provided recommendations to enhance the tool. Our findings will inform future technology-enabled social memory aid development for PWMC and family caregivers.

Refining a Driving Retirement Program for Persons With Dementia and Their Care Partners: A Mixed Methods Evaluation of CarFreeMe™-Dementia.

OBJECTIVES: We adapted the CarFreeMe™-Dementia program created by The University of Queensland for drivers in the United States. CarFreeMe™-Dementia aims to assist drivers living with dementia and their care partners as they plan for or adjust to driving retirement. This semistructured program focuses on driving retirement education and support. Topics include how dementia affects driving, lifestyle planning, stress management, and alternative transportation options. This study evaluated the feasibility, acceptability, and utility of the CarFreeMe™-Dementia intervention. METHODS: This pilot phase of the study included 16 care partners and 11 drivers with memory loss who were preparing for or adjusting to driving retirement. Participants completed 4-8 CarFreeMe™-Dementia intervention telehealth sessions. Online surveys (baseline, 1- and 3-month) and postintervention semistructured interviews informed evaluation of the intervention program using a mixed methods approach. RESULTS: This study established initial support for CarFreeMe™-Dementia in the United States. Participants indicated the program facilitated dialogue around driving retirement and provided guidance on community engagement without driving. Respondents appreciated the program's emphasis on overall well-being, promoted through lifestyle planning and stress management. They also reported the program offered practical preparation for transitioning to driving retirement. DISCUSSION: The CarFreeMe™-Dementia intervention, tailored to an American audience, appears to be a feasible, acceptable, and useful support program for drivers with memory loss (and/or their care partners) who are preparing for or adjusting to driving retirement. Further investigations of the efficacy of the CarFreeMe™-Dementia intervention in the United States, as well as in other countries and cultural contexts, are warranted.

Open science in dementia care embedded pragmatic clinical trials.

Few dementia care interventions have been translated to healthcare contexts for those who need them. Embedded pragmatic clinical trials (ePCTs) are one design that can expedite the timeframe of research translation to clinical practice. As the National Institutes of Health (NIH) and other funders commit immense new resources to increasing the nation's capacity to conduct dementia care ePCTs, we call on psychologists to employ their extensive expertise in open science to improve the quality of dementia care ePCTs. This article provides several recommendations to enhance the transparency and reporting rigor of ePCTs in dementia care and other chronic disease contexts. We illustrate these recommendations in the context of a recent pilot pragmatic trial known as the Porchlight Project. Porchlight provided training to volunteers who serve clients and caregivers to help them provide more "dementia capable" support. Notably this trial did not include a special effort to make use of open science practices. We discuss the benefits and costs had the Porchlight Project incorporated open science principles. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Reimagining Family Involvement in Residential Long-Term Care.

Although descriptions of family involvement in residential long-term care (RLTC) are available in the scientific literature, how family involvement is optimized in nursing homes or assisted living settings remains underexplored. During the facility lockdowns and visitor restrictions of the COVID-19 pandemic, residents experienced social deprivation that may have resulted in significant and adverse health outcomes. As with so many other critical issues in RLTC, the COVID-19 pandemic has magnified the need to determine how families can remain most effectively involved in the lives of residents. This article seeks to better understand the state of the science of family involvement in RTLC and how the COVID-19 pandemic has expedited the need to revisit, and reimagine, family involvement in RLTC.

Profiles of Caregiving Arrangements of Community-dwelling People Living with Probable Dementia.

People living with dementia receive care from multiple caregivers, but little is known about the structure of their caregiving arrangements. This study used the Health and Retirement Study and latent class analyses to identify subgroups of caregiving arrangements based on caregiving hours received from spouses, children, other family/friends, and paid individuals among married (n = 361) and unmarried (n = 473) community-dwelling people with probable dementia. Three classes in the married sample (class 1 "low hours with shared care," class 2 "spouse-dominant care," and class 3 "children-dominant care") were identified. In class 1, spouses, children, and paid individuals provided 53%, 22%, and 26% of the caregiving hours, respectively. Three classes in the unmarried sample (class 1 "low hours with shared care," class 2 "children-dominant care," and class 3 "paid-dominant care") were identified. In unmarried class 1, children, other family/friends, and paid individuals provided 35%, 41% and 24% of the caregiving hours, respectively.

Caring for a Relative With Dementia in Long-Term Care During COVID-19.

OBJECTIVES: The COVID-19 pandemic created unique stressors for caregivers of persons with dementia living in long-term care (LTC) facilities. The purpose of this qualitative study was to identify the challenges associated with caring for a relative with dementia in LTC during the pandemic, as well as resources, strategies, and practices caregivers found helpful in coping with COVID-19. DESIGN: This study was conducted within the context of an ongoing randomized controlled trial of a psychosocial intervention to support caregivers. Open-ended survey responses (n = 125) and semistructured interviews with a subset of the sample (n = 20) collected between June 2020 and June 2021 explored caregivers' experiences during COVID-19. SETTING AND PARTICIPANTS: Participants included 125 family caregivers of persons with dementia living in residential LTC. METHODS: Thematic analysis was used to identify themes capturing caregivers' experiences. RESULTS: In addition to concerns about COVID-19 infection, participants reported key challenges such as the difficulty of maintaining contact with relatives because of visiting restrictions, lack of information about relatives' health and well-being, worries about overburdened LTC staff, impossibility of returning relatives home from the LTC facility, and fears about relatives dying alone. Participants also identified resources, strategies, and practices that they perceived as helpful, including effective infection prevention within the LTC facility, good communication with LTC staff, and creative strategies for connecting with their relatives. CONCLUSIONS AND IMPLICATIONS: This qualitative analysis informs recommendations for practice within LTC facilities, as well as supports that may help caregivers manage stressful situations in the context of COVID-19. Vaccination and testing protocols should be implemented to maximize family caregivers' opportunities for in-person contact with relatives in LTC, as alternative visiting modalities were often unsatisfactory or unfeasible. Informing caregivers regularly about individual residents' needs and status is crucial. Supports for bereaved caregivers should address complicated grief and feelings of loss.

Remote activity monitoring for family caregivers of persons living with dementia: a mixed methods, randomized controlled evaluation.

BACKGROUND: The goal of the present study was to determine whether a remote activity monitoring (RAM) system benefited caregivers who aided relatives with Alzheimer's disease or related dementias (ADRD) living at home. We hypothesized that over 18 months, families randomly assigned to receive RAM technology in the home of the person with ADRD would experience statistically significant (p < .05): 1) improvements in caregiver self-efficacy and sense of competence when managing their relative's dementia; and 2) reductions in caregiver distress (e.g., burden, role captivity, and depression). METHODS: An embedded mixed methods design was utilized, where 179 dementia caregivers were randomly assigned to receive RAM or not. Caregivers were surveyed bi-annually over an 18-month period to collect quantitative and qualitative data on RAM's effects. Semi-structured interviews with 30 caregivers were completed following the 18-month data collection period to explore more in-depth how and why RAM was perceived as helpful or not. RESULTS: Growth curve models showed no direct or moderation effect of RAM on dementia caregiver outcomes. The qualitative data revealed a complex utilization process of RAM influenced by the care environment/context as well as the temporal progression of ADRD and the caregiving trajectory. CONCLUSIONS: The findings suggest the need for developing more effective mechanisms to match appropriate technologies with the heterogeneous needs and care contexts of people living with ADRD and their caregivers. A triadic approach that incorporates professional care management alongside passive monitoring systems such as RAM may also enhance potential benefits. TRIAL REGISTRATION: ClinicalTrials.gov NCT03665909 , retrospectively registered on 11 Sept 2018.

A conceptual review of identity integration across adulthood.

Though Erikson recognized identity development as a lifelong project, most research on identity has focused on adolescents and emerging adults. Less is known about how the identity formed in adolescence is maintained and adapted across the adult life span. The purpose of the present paper is to provide a conceptual review and elaboration of Erikson's (1968) theory focused on identity integration, a construct that is particularly relevant to adult identity development. Identity integration describes the process of bringing together various aspects of one's self into a coherent whole, and the sense of self-continuity and wholeness that emerges as a result of these processes. Informed by the identity and life span development literatures, we present a conceptual framework that describes how identity integration is maintained across the adult life span, and how it is reestablished when changing life circumstances present threats to an individual's identity. These maintenance and reestablishment processes help to support adults' well-being and adaptation to major life transitions and stressful events. This conceptual framework is intended to facilitate research on identity integration in adulthood, a time of life that has been less often studied in the identity literature but that can involve identity dynamics that are just as critical as those in adolescence. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Implications of identity resolution in emerging adulthood for intimacy, generativity, and integrity across the adult lifespan.

Erikson's psychosocial stage model posits that identity formation is a key developmental task for adolescents, and that successfully resolving the identity versus role confusion crisis at this time of life has important impacts on psychosocial development through adulthood. However, little empirical work has tested the consequences of early-life identity development for progression through the subsequent psychosocial stages in Erikson's model. The purpose of the present study was to test whether identity resolution measured during emerging adulthood predicted later developmental trajectories of intimacy, generativity, and integrity across adulthood. We used data from four cohorts of participants in the Rochester Adult Longitudinal Study (RALS; N = 1,224), with up to five assessments spanning the twenties through the sixties. Latent growth curve modeling was used to estimate developmental trajectories for intimacy, generativity, and integrity, and to test the association between emerging adulthood identity resolution and growth parameters for each psychosocial outcome. Findings suggested that individuals with higher emerging adulthood identity resolution also experienced high levels of intimacy, generativity, and integrity in emerging adulthood, and these levels remained consistently high across adulthood. In contrast, those with lower identity resolution in emerging adulthood experienced lower initial levels of intimacy, generativity, and integrity, but faster growth over time. As a result, these trajectories appeared to nearly converge by the time participants were in their sixties, suggesting that one's emerging adulthood identity has less importance over time, and that individuals who struggled more with identity formation in adolescence and emerging adulthood are able to make up for it later in life. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

What the public should know about veterans returning from combat deployment to support reintegration: A qualitative analysis.

Consensus reports have called for interventions to educate civilians about the reintegration challenges that veterans experience. The current study describes veterans' perspectives of what the public should know and what the public can do to help veterans reintegrate into civilian life. We conducted thematic analysis of written essays from a stratified random sample of 100 US veterans (half women, half deployed from National Guard or Reserves) from Afghanistan and Iraq military operations who had participated in the control writing condition from a randomized controlled trial of expressive writing to improve reintegration outcomes. Veterans described a military-civilian divide that makes reintegration difficult and recommended that the public help bridge this divide. The divide was attributable to the uniqueness of military culture and bonds, the personal changes associated with deployment, and the time it takes for veterans to reacclimate. Five themes captured what the public can do to foster veteran reintegration: understand deployment hardships; appreciate deployment accomplishments; assist veterans in getting professional help; listen, don't judge; and recognize that employment is critical to reintegration. Themes were present across groupings by gender, type of military service and screening status for posttraumatic stress disorder. Findings can inform interventions that target the public's understanding of and response to returning veteran. Consistent with an ecological model of reintegration, such interventions have the potential to foster successful reintegration. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Do Big Five Personality Traits Moderate the Effects of Stressful Life Events on Health Trajectories? Evidence From the Health and Retirement Study.

OBJECTIVES: Theory suggests that individuals with higher neuroticism have more severe negative reactions to stress, though empirical work examining the interaction between neuroticism and stressors has yielded mixed results. The present study investigated whether neuroticism and other Big Five traits moderated the effects of recent stressful life events on older adults' health outcomes. METHOD: Data were drawn from the subset of Health and Retirement Study participants who completed a Big Five personality measure (N = 14,418). We used latent growth curve models to estimate trajectories of change in depressive symptoms, self-rated physical health, and C-reactive protein levels over the course of 10 years (up to six waves). We included Big Five traits and stressful life events as covariates to test their effects on each of these three health outcomes. We examined stressful life events within domains of family, work/finances, home, and health, as well as a total count across all event types. RESULTS: Big Five traits and stressful life events were independently related to depressive symptoms and self-rated health. There were no significant interactions between Big Five traits and stressful life events. C-reactive protein levels were unrelated to Big Five traits and stressful life events. DISCUSSION: Findings suggest that personality and stressful life events are important predictors of health outcomes. However, we found little evidence that personality moderates the effect of major stressful events across a 2-year time frame. Any heightened reactivity related to high neuroticism may be time-limited to the months immediately after a major stressful event.

Dementia Caregivers' Experiences and Reactions to Remote Activity Monitoring System Alerts.

Technology-based tools, including remote activity monitoring (RAM) systems, have been proposed as valuable aids for family caregivers of people with dementia. Previous analyses have shown limited effects of these systems and highlighted a number of barriers, including false alarms. We used data from an ongoing embedded mixed method randomized controlled intervention to describe patterns of alerts and their association with receipt of the RAM system and caregiver outcomes. Quantitative analyses showed a modest positive association between the number of alerts during the first month and system review score. In addition, qualitative results illustrated the importance of alert context, including utility, accuracy, and type of alert delivery. These findings highlight the relevance of early alerts to engagement with and perceived benefit from the RAM system. [Journal of Gerontological Nursing, 47(1), 13-20.].

Identity disruption and its association with mental health among veterans with reintegration difficulty.

Most research and theory on identity integration focuses on adolescents and young adults under age 30, and relatively little is known about how identity adjusts to major life events later in life. The purpose of the present study was to operationalize and investigate identity disruption, or a loss of temporal identity integration following a disruptive life event, within the developmental context of established adulthood and midlife. We used a mixed-methods approach to examine identity disruption among 244 Afghanistan and Iraq war veterans with reintegration difficulty who participated in an expressive writing intervention. Participants completed measures of social support, posttraumatic stress disorder (PTSD) symptom severity, satisfaction with life, and reintegration difficulty at baseline right before writing, and 3 and 6 months after the expressive writing intervention. The expressive writing samples were coded for identity disruption using thematic analysis. We hypothesized that identity disruption would be associated with lower social support, more severe PTSD symptoms, lower satisfaction with life, and greater reintegration difficulty at baseline. Forty-nine percent (n = 121) of the sample indicated identity disruption in their writing samples. Identity disruption was associated with more severe PTSD symptoms, lower satisfaction with life, and greater reintegration difficulty at baseline, and with less improvement in social support. The findings suggest that identity disruption is a meaningful construct for extending the study of identity development to established adult and midlife populations, and for understanding veterans' adjustment to civilian life. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

The Feasibility and Utility of a Personal Health Record for Persons With Dementia and Their Family Caregivers for Web-Based Care Coordination: Mixed Methods Study.

BACKGROUND: Managing the complex and long-term care needs of persons living with Alzheimer disease and related dementias (ADRD) can adversely impact the health of informal caregivers and their care recipients. Web-based personal health records (PHRs) are one way to potentially alleviate a caregiver's burden by simplifying ADRD health care management. OBJECTIVE: This study aimed to evaluate Personal Health Record for Persons with Dementia and Their Family Caregivers (PHR-ADRD), a free web-based information exchange tool, using a multiphase mixed methods approach. METHODS: Dementia caregivers (N=34) were surveyed for their well-being and perceptions of PHR-ADRD feasibility and utility at 6 and 12 months using close- and open-ended questions as well as a semistructured interview (n=8). Exploratory analyses compared participants' characteristics as well as PHR-ADRD use and experiences based on overall favorability status. RESULTS: Feasibility and utility scores decreased over time, but a subset of participants indicated that the system was helpful. Quantitative comparisons could not explain why some participants indicated favorable, neutral, or unfavorable views of the system overall or had not engaged with PHR-ADRD. Qualitative findings suggested that technology literacy and primary care provider buy-in were barriers. Both qualitative and qualitative findings indicated that time constraints to learn and use the system affected most participants. CONCLUSIONS: Development and dissemination of PHRs for family caregivers of persons with ADRD should aim to make systems user-friendly for persons with limited time and technological literacy. Establishing health care provider buy-in may be essential to the future success of any PHR system.

Family caregiving in the community up to 8-years after onset of dementia.

BACKGROUND: Persons with Alzheimer's disease and related dementias (ADRD) receive care from family/friends, but how care changes from the onset of dementia remains less understood. METHODS: We used the Health and Retirement Study (2002-2012) to identify community-dwelling individuals predicted to have incident ADRD. We investigated the amount of caregiving received for activities of daily living in the 8-years after disease onset. RESULTS: At incidence (n = 1158), persons with ADRD received 151 h (SD = 231) of caregiving a month, 25 (SD = 26) caregiving days a month and had 1.3 (SD = 1.4) caregivers a month. By 8-years post incidence, 187 (16%) individuals transitioned to a nursing home and 662 (57%) died in the community. Community-dwelling persons with ADRD at 8-years post incidence (n = 30) received 283 h (SD = 257) of caregiving, 38 (SD = 24) caregiving days, and had 2.2 (SD = 1.3) caregivers. CONCLUSIONS: Community-dwelling persons with ADRD receive a substantial amount of caregiving over the first 8-years after disease onset.

"It's Like a Cyber-Security Blanket": The Utility of Remote Activity Monitoring in Family Dementia Care.

Technologies have emerged that aim to help older persons with Alzheimer's disease and related dementias (ADRDs) remain at home while also supporting their caregiving family members. However, the usefulness of these innovations, particularly in home-based care contexts, remains underexplored. The current study evaluated the acceptability and utility of an in-home remote activity monitoring (RAM) system for 30 family caregivers of persons with ADRD via quantitative survey data collected over a 6-month period and qualitative survey and interview data collected for up to 18 months. A parallel convergent mixed methods design was employed. The integrated qualitative and quantitative data suggested that RAM technology offered ongoing monitoring and provided caregivers with a sense of security. Considerable customization was needed so that RAM was most appropriate for persons with ADRD. The findings have important clinical implications when considering how RAM can supplement, or potentially substitute for, ADRD family care.

Perceptions of precision medicine among diverse dementia caregivers and professional providers.

INTRODUCTION: Underrepresented groups experience health disparities and a history of exploitation by researchers and the health-care system that may contribute to distrust of new treatments and technologies. This study aims to understand how diverse family caregivers and health-care professionals view the benefits and risks of precision medicine as well as cultural dimensions to consider when developing and implementing precision medicine interventions in dementia care. METHODS: Eight focus group sessions and one individual interview were conducted over a 6-month period. Fifty-four focus group participants included African-American, American Indian, rural Caucasian, Latino, and West African caregivers and health professionals. The majority of participants were female (73%) and were of Hispanic/Latino ethnicity (68%). About a third of participants identified their race as white. Participants were presented with four hypothetical scenarios related to precision medicine diagnostic and treatment approaches in dementia care: (1) genetic testing for dementia risk, (2) health-care informatics to determine individualized medication dosages based on health and family history, (3) a smartphone application providing dementia caregiving tips, and (4) remote activity monitoring technology in the home. Focus groups' responses were coded using thematic analysis. RESULTS: Participants indicated skepticism regarding the use of precision medicine in their communities. Concerns included cost of precision medicine and insurance coverage; lack of alignment with cultural norms; fraught relationships between communities, health professionals, and researchers; data ownership and privacy; and the trade-off between knowing risk and treatment benefit. DISCUSSION: Establishing relationships with underserved communities is crucial to advancing precision medicine in dementia care. Appropriate engagement with diverse racial, ethnic, and geographic communities may require significant investment but is necessary to deliver precision medicine effectively.