Reflections on 3 Years of Innovation: Recognizing the Need for Innovation Beyond the Clinical Care Pathway.

The Susan and Richard Levy Healthcare Delivery Incubator is designed to bring about rapid, sustainable, scalable, and transformational health care redesign. All 10 projects in the initial 3 cohorts of teams embraced the Incubator process-forming diverse teams and following a design-thinking informed curriculum-and each successfully implemented improvements or innovations by the end of their project. The purpose of this article is to identify the key features of teams' work that may help account for projects' success. For the 10 projects completed, findings from debrief interviews and staff observations were examined to identify processes key to project's success. Analysis highlighted cross-project learnings that indicate nonclinical aspects of care delivery that play a critical role in project innovation success. Innovating health care delivery requires considering social and political determinants of health. The Incubator's process and structures enable teams to identify and respond to a broad range of health determinants.

Assessing and Identifying Improvements for Lung Cancer Screening in a Rural Population: A Human-Centered Design and Systems Approach.

Although lung cancer claims more lives than any other cancer in the United States, screening is severely underutilized, with <6% of eligible patients screened nationally in 2021 versus 76% for breast cancer and 67% for colorectal cancer. This article describes an effort to identify key reasons for the underutilization of lung cancer screening in a rural population and to develop interventions to address these barriers suitable for both a large health system and local community clinics. Data were generated from 26 stakeholder interviews (clinicians, clinical staff, and eligible patients), a review of key systems (Electronic Health Record and billing records), and feedback on the feasibility of several potential interventions by health care system staff. These data informed a human-centered design approach to identify possible interventions within a complex health care system by exposing gaps in care processes and electronic health record platforms that can lead patients to be overlooked for potentially life-saving screening. Deployed interventions included communication efforts focused on (1) increasing patient awareness, (2) improving physician patient identification, and (3) supporting patient management. Preliminary outcomes are discussed.

Coproduction of Low-Barrier Hepatitis C Virus and HIV Care for People Who Use Drugs in a Rural Community: Brief Qualitative Report.

BACKGROUND: People who inject drugs are experiencing syndemic conditions with increasing risk of infection with hepatitis C (HCV) and HIV. However, rates of accessing HCV and HIV testing and treatment among people who inject drugs are low for various reasons, including the criminalization of drug use, which leads to a focus on treating drug use rather than caring for drug users. For many people who inject drugs, health care becomes a form of structural violence, resulting in traumatic experiences, fear of police violence, unmet needs, and avoidance of medical care. There is a clear need for novel approaches to health care delivery for people who inject drugs. OBJECTIVE: This study aimed to analyze the process of a multidisciplinary team-encompassing health care professionals, community representatives, researchers, and people with lived experience using drugs-that was formed to develop a deep understanding of the experiences of people who inject drugs and local ecosystem opportunities and constraints to inform the cocreation of low-barrier, innovative HCV or HIV care in a rural community. Given the need for innovative approaches to redesigning health care, we sought to identify challenges and tensions encountered in this process and strategies for overcoming these challenges. METHODS: Analysis was based on an in-depth review of meeting notes from the project year, followed by member-checking with the project team to revise and expand upon the challenges encountered and strategies identified to navigate these challenges. RESULTS: Challenges and tensions included: scoping the project, setting the pace and urgency of the work, adapting to web-based work, navigating ethics and practice of payment, defining success, and situating the project for sustainability. Strategies to navigate these challenges included: dedicated effort to building personal and meaningful connections, fostering mutual respect, identifying common ground to make shared decisions, and redefining successes. CONCLUSIONS: While cocreated care presents challenges, the resulting program is strengthened by challenging assumptions and carefully considering various perspectives to think creatively and productively about solutions.

Innovation pathways to preserve: Rapid healthcare innovation and dissemination during the COVID-19 pandemic.

During the COVID-19 pandemic, healthcare systems rapidly responded to challenges in healthcare delivery with innovation. Innovations developed during the COVID-19 pandemic have filled needed gaps in medical care and many may be sustained long term. The unique conditions and processes that facilitated such rapid, successful, and collective innovation should be explored to support future change in healthcare. Decentralized decision making, crowdsourcing, and nontraditional information sharing may be valuable for ongoing innovation in healthcare delivery. Shared, collective purpose in solving challenges in healthcare appear critical to this work. Health care systems aiming to sustain rapid healthcare delivery innovation should consider these processes and focus on facilitating shared purpose to sustain ongoing innovation.

Redesigning care to support earlier discharge from a neonatal intensive care unit: a design thinking informed pilot.

BACKGROUND: Preterm infants may remain in neonatal intensive care units (NICUs) to receive proper nutrition via nasogastric tube feedings. However, prolonged NICU stays can have negative effects for the patient, the family and the health system. AIM: To demonstrate how a patient-centred, design thinking informed approach supported the development of a pilot programme to enable earlier discharge of preterm babies. METHOD: We report on our design thinking-empathy building approach to programme design, initial outcomes and considerations for ongoing study. RESULTS: Through the use of design thinking methods, we identified unique needs, preferences and concerns that guided the development of our novel early discharge programme. We found that stable, preterm infants unable to feed by mouth and requiring nasogastric tubes can be cared for at home with remote patient monitoring and telehealth support. In addition, novel feeding strategies can help address parental preferences without compromising infant growth. CONCLUSION: A patient-centred, design thinking informed approach supported the development of a pilot programme to enable earlier discharge of preterm babies. The programme resulted in a reduced length of stay, thereby increasing NICU bed capacity and limiting hospital turn-aways.

Designing a Health Care Delivery Innovation Lab: Reflections From The First Year.

This article shares initial experiences designing and operating a new health care delivery innovation program at a rural academic medical center. The program was designed with the belief that dedicated team member time, senior leadership engagement, deliberate project/team selection, and robust, tailored project support would enable rapid and transformative health care redesign. Three teams were supported in the initial 1-year funding cycle; all 3 teams successfully designed, implemented, and tested new care models for different serious illness populations. Results demonstrated improved satisfaction, decreased length of stay, and a positive return on investment. Critical evaluation of current structures and processes will help identify refined strategies to support diverse teams that will challenge the norms of health care delivery and explore novel partnerships, approaches, and settings for care delivery. This article helps advance the conversation on how to think strategically and critically about current and future health care innovation efforts.

Sensory Processing Abnormalities in Community-Dwelling Older Adults with Cognitive Impairment: A Mixed Methods Study.

Mild cognitive impairment (MCI) or dementia often leads to behavioral and psychiatric symptoms of dementia (BPSD). Sensory processing abnormalities may be associated with BPSD. The purpose of this study was to explore relationships among sensory processing, behavior, and environmental features within the homes of people with MCI or dementia. This project used mixed methods to assess participants' sensory processing, care partner perspectives on behaviors, and in situ observations of the home environment. Nine participants with cognitive impairment (MCI n = 8, early dementia = 1) and their care partners were included. Seven participants with cognitive impairment were reported to have abnormal sensory processing. Findings suggest that unique environmental adaptations, tailored to personal and sensory preferences for each participant, were associated with a decreased level of behavioral disruption during the observation periods. Implementing sensory-based approaches to maximize environment adaptation may be beneficial in reducing disruptive behaviors for adults with cognitive impairment.

Comparison of behaviors characteristic of autism spectrum disorder behaviors and behavioral and psychiatric symptoms of dementia.

BACKGROUND: Similarities exist in behavioral expression of autism spectrum disorder (ASD) and Alzheimer's disease and related dementias (ADRD). The purpose of this study was to assess presence of behavioral and psychiatric symptoms of dementia (BPSD) and ASD-like behaviors in adults with ADRD. METHODS: Using a cross-sectional design, data from University of Kentucky Alzheimer's Disease Center participant cohort were used. Hierarchical linear regression was used to assess (1) the relationship between ASD-like behaviors (measured by the Gilliam Autism Rating Scale-Second Edition, GARS-2) and BPSD measured by the Neuropsychiatric Inventory (NPI), and (2) the relationship between ASD-like behaviors and dementia severity (measured by the Clinical Dementia Rating [CDR] sum of boxes), when controlling for BPSD. RESULTS: Complete data were available for 142 participants. Using α of 0.05, analyses identified ASD behaviors were significantly associated with BPSD severity ratings (r = 0.47; p < 0.001) and dementia severity (r = 0.46; p < 0.001). GARS-2 explained 6.1% (p < 0.001) of variance in CDR sum of boxes when controlling for NPI and other covariates. DISCUSSION: There is significant overlap in behaviors characteristic of ASD and BPSD as assessed by the NPI and GARS-2, despite the use of these instruments in disparate developmental vs. aging settings. ASD behaviors appear to not be solely present in early childhood as a manifestation of ASD but are also present in older adults with neurodegenerative cognitive impairment. Such associations warrant additional research into causation, assessment, and behavioral interventions to further enable new therapeutic approaches targeting ASD behaviors across the lifespan.

Older Adults' Adaptations to the Call for Social Distancing and Use of Technology: Insights From Socioemotional Selectivity Theory and Lived Experiences.

Social distancing guidelines during COVID can be isolating, especially for older adults, with potential for poor health outcomes. Technology offers opportunities for remote connection, yet, older adults' use of and perspectives on technology during this time remain largely unknown. The purpose of this study was to gain insight into older adults' technology use and preferences to inform the development of a technology training intervention to support older adult well-being. Semi-structured interviews were conducted with 30 older adults. Interviews were analyzed using an iterative, constant comparison approach. Findings were consistent with Socioemotional Selectivity Theory; respondents were primarily interested in technology to support emotionally meaningful goals. Participants indicated limited interest in technology training, referencing diminished future time perspectives to explain disinterest. Findings suggest that efforts to encourage older adults' expanded technology adoption should highlight how use supports emotionally meaningful goals and provide low-effort, timely training, tied to specific and clear applications.

Associations of Future Cognitive Decline with Sexual Satisfaction among Married Older Adults.

Objectives: This study sought to explore changes in longitudinal cognitive status in relation to baseline measures of intimacy and sexuality in cognitively intact, married older adults.Methods: Baseline intimacy and sexuality survey data from 155, cognitively intact, married, older adults were collected using a novel survey instrument that explored the domains of: 1) romance with one's partner, 2) sexual satisfaction, 3) beliefs about sexuality, and 4) social support and emotional intimacy. These data were analyzed in relation to change in cognitive status over a 10-year follow-up period using binary logistic regression modeling. Exploratory factor analysis was used to assess the shared variance of survey items attributable to intimacy and sexuality without specification of an a priori hypothesis regarding the association of intimacy and sexuality with future change in cognitive status.Results: Over the 10-year study period, 33.5% (n = 52) of individuals developed cognitive impairment. Participants with greater sexual satisfaction scores at baseline were statistically less likely to convert from cognitively intact to mild cognitive impairment or dementia in the future (p = .01). The domains of romance with one's partner, beliefs about sexuality, and social support/emotional intimacy were not predictive of future longitudinal changes in cognitive status.Conclusions: Sexual satisfaction is associated with longitudinal cognitive outcomes in cognitively intact, married, older adults.Clinical implications: Clinicians should routinely assess for sexual satisfaction among older adults and refer to appropriate providers, such as couples or sex therapists, when appropriate.

Insights From African American Older Adults on Brain Health Research Engagement: "Need to See the Need".

African Americans (AAs) have an elevated risk of developing dementia, yet are underrepresented in clinical research. This project uses a community-engaged photovoice approach to add to existing understanding of barriers and facilitators to AA participation in Alzheimer's disease research and identify strategies to enhance engagement. Three AA research advocates served as community facilitators to identify and guide groups of AA adults through an eight to nine session photovoice project. Group sessions involved discussions and sharing of images pertaining to various prompts in the area of brain health and research participation. Sessions were audiotaped and transcribed verbatim. Participants identified three categories of barriers to AA research participation: (a) Mistrust, (b) avoidance and fear of acknowledging problems, and (c) seeing the risks of research but not the need. Participants shared suggestions and approaches for ameliorating each of these barriers. This process revealed unique insights into barriers and opportunities for increasing AA engagement in aging and dementia research.

Alzheimer Disease Worries, Fears, and Stigma and Their Relationship to Genetic and Interventional Research Engagement.

BACKGROUND: Alzheimer disease (AD) research increasingly requires healthy individuals willing to undergo genetic testing. OBJECTIVE: This study seeks to: (1) describe older adults' beliefs about AD genetic testing, worry about AD, and fear of AD stigma, and (2) explore how these constructs relate to research participation. METHODS: Surveys were sent to participants active in AD-observational research and those that were not. Three measures of research participation were explored: (1) being a current research participant, (2) self-report of clinical trial participation, and (3) expressing genetic registry interest. RESULTS: The majority of the 502 respondents perceived greater benefit than the risk associated with AD genetic testing. AD worry and perceptions of AD stigma were low. Higher levels of AD worry and lower perceptions of AD stigma were associated with being a current AD research volunteer. AD worry and stigma were unrelated to clinical trial participation or genetic registry interest; these research participation measures were associated with AD genetic testing benefit. CONCLUSIONS: Beliefs about AD genetic testing, AD worry, and AD stigma are related to research participation, but relationships vary based on the research participation investigated. Future work should identify how these findings can inform outreach and recruitment efforts.

Rural Caregivers: Identification of Informational Needs Through Telemedicine Questions.

OBJECTIVES: The prevalence of Alzheimer's disease and associated disorders is increasing. Rural residents in the United States have less access to memory care specialists and educational and community resources than in other areas of the country. Over a decade ago, we initiated an interdisciplinary rural caregiving telemedicine program to reach Kentucky residents in areas of the state where resources for supporting individuals with dementia are limited. Telemedicine programs involve a short informational presentation followed by a question and answer session; programs are offered 4 times a year. The purpose of this study was to explore questions asked over 1 year of the rural caregiving telemedicine program-encompassing 5 programs-to identify the scope of dementia-related knowledge gaps among attendees. METHODS: Questions from the 5 programs were recorded and content analyzed to identify areas of frequent informational requests. RESULTS: There were a total of 69 questions over the 5 sessions. For each program, questions ended due to time constraints rather than exhausting all inquiries. The most common topical areas of questions related to risk factors, behavioral management, diagnosis, and medications. DISCUSSION AND IMPLICATIONS: This study highlights that rural caregivers in Kentucky have diverse dementia educational needs. Rural communities may benefit from additional, targeted resources addressing these common areas of unmet informational needs.

Real-world Site Experiences With GeneMatch: The Role of a Recruitment-related Registry in the Context of Local Site Effort to Support Alzheimer Disease Prevention Research.

BACKGROUND: Registries have been proposed as a novel way to accelerate targeted recruitment for Alzheimer disease prevention clinical trials. However, there are limited data regarding registry effectiveness at accelerating recruitment and enrollment in research opportunities. This manuscript explores one site's experience with GeneMatch, a novel genetic registry for Alzheimer disease research. METHODS: Referrals from GeneMatch to the site were tracked to understand the demographics of those referred and ultimate research enrollment outcomes. Referrals were cross-referenced with the site's existing recruitment database, to better understand the role of GeneMatch in the context of existing recruitment efforts. RESULTS: GeneMatch referred 86 individuals to the site, resulting in 54 individuals coming into the site to pursue research involvement further. The majority of referrals (52/86, 60.47%) did not have prior contact with the site about research engagement, and having prior site contact did not significantly relate to engaging in on-site research. CONCLUSIONS: GeneMatch helped identify new individuals for participation in Alzheimer disease prevention studies. Results highlight the value of continuing local site-level efforts while also taking advantage of registries to enhance research recruitment. Ongoing efforts to further develop these and other novel strategies for outreach and engagement are much needed.

Will "social distancing" lead to future "research distancing": A reflection on COVID-19 impacts on Alzheimer's disease research.

Coronavirus disease 19 (COVID-19) has dramatically altered everyday life, including the field of Alzheimer's disease (AD) research. This perspective article explores some of the ways in which COVID-19 has already impacted the field, anticipates some of the long-lasting effects, and explores strategies for addressing current and future needs. Areas of impact include study integrity, regulatory and industry issues, and participant engagement. Proposed strategies for addressing these challenges include analytic methods to deal with large degrees of missing data and development of patient-centered, user-friendly, remote data collection tools and assessments. We also highlight the importance of maintaining participant well-being as a first and constant priority.

The Effectiveness of Community-based Outreach Events for the Promotion of African American Research Participation.

INTRODUCTION: African Americans (AA) are disproportionately affected by Alzheimer's disease and related dementias yet are under-represented in clinical research. Outreach events for AA are offered to encourage research participation; however, this approach's effectiveness remains largely unexplored. METHODS: To explore the effectiveness of AA-focused versus general audience events, the authors examined attendance data over 5 years, encompassing 10 general audience events and 4 events focused on AA. For each individual, the authors searched center records for recruitment contacts and research enrollment. Summary scores for attendance at AA-focused events, general audience events, and total events were compared between those with and without research involvement. RESULTS: Out of 773 unique AA that attended ≥1 event, 88 became or were involved in research (11.4% engagement). AA-focused events achieved greater AA attendance than general audience events. Although research-engaged individuals were more likely to have ever attended an AA-focused event than a general audience event, attendance at AA-focused events did not statistically relate to research engagement. In contrast, attendance at events focused on the general public was related to an increased likelihood of research participation. DISCUSSION: These findings have important implications for designing and implementing community events to encourage AA research participation.

Identifying Adaptive and Maladaptive Behaviors Following a Diagnosis of Mild Cognitive Impairment.

INTRODUCTION: Individual reactions to a diagnosis of mild cognitive impairment (MCI) can vary in a wide range of both adaptive and maladaptive responses. Understanding such reactions to diagnosis is important to maximize adaptive responses that can promote continued independence. METHODS: In this pilot study, the Aging and Memory Quality of Life survey was developed to facilitate an understanding of adaptive and maladaptive behaviors results from a diagnosis of MCI. The Aging and Memory Quality of Life was administered to 45 individuals diagnosed with MCI and 45 cognitively normal participants serving as control subjects matched for age, sex, and education. Study partners were surveyed to collect corroborating and or discrepant observer responses. RESULTS: Inconsistent with study partners' reporting, MCI subjects may be underreporting physical limitations, and overreporting medication compliance. MCI subjects identified challenges to managing financial affairs. DISCUSSION: Developing strategies to circumvent the development of maladaptive behaviors could significantly reduce morbidity and mortality in MCI patients.