Non-medical Resources Research Articles

Nonmedical Gender-Affirming Supports and Resources Most Desired by Transgender and Non-Binary Adolescents

Nonmedical Gender-Affirming Supports and Resources Most Desired by Transgender and Non-Binary Adolescents

Quantifying the Cost of Shigella Diarrhea in the Enterics for Global Health (EFGH) Shigella Surveillance Study.

Comparative costs of public health interventions provide valuable data for decision making. However, the availability of comprehensive and context-specific costs is often limited. The Enterics for Global Health (EFGH) Shigella surveillance study-a facility-based diarrhea surveillance study across 7 countries-aims to generate evidence on health system and household costs associated with medically attended Shigella diarrhea in children. EFGH working groups comprising representatives from each country (Bangladesh, Kenya, Malawi, Mali, Pakistan, Peru, and The Gambia) developed the study methods. Over a 24-month surveillance period, facility-based surveys will collect data on resource use for the medical treatment of an estimated 9800 children aged 6-35 months with diarrhea. Through these surveys, we will describe and quantify medical resources used in the treatment of diarrhea (eg, medication, supplies, and provider salaries), nonmedical resources (eg, travel costs to the facility), and the amount of caregiver time lost from work to care for their sick child. To assign costs to each identified resource, we will use a combination of caregiver interviews, national medical price lists, and databases from the World Health Organization and the International Labor Organization. Our primary outcome will be the estimated cost per inpatient and outpatient episode of medically attended Shigella diarrhea treatment across countries, levels of care, and illness severity. We will conduct sensitivity and scenario analysis to determine how unit costs vary across scenarios. Results from this study will contribute to the existing body of literature on diarrhea costing and inform future policy decisions related to investments in preventive strategies for Shigella.

Can hotels be used as alternative care sites in disasters and public health emergencies-A narrative review.

Managing disasters and public health emergencies poses a complex challenge, particularly in maintaining the crucial elements of surge capacity, often referred to as the 4S: staff, stuff, space, and system. While discussions surrounding the management of these emergencies typically emphasize their impact on emergency healthcare services, resources, and capabilities, it is essential to recognize the inherent limitations of these resources. Therefore, integrating non-medical resources such as community staff, supplies, and spaces into the response chain is equally important. Among community facilities, hotels are particularly intriguing due to their organizational and structural capabilities to serve as alternative care sites for lightly injured or non-injured emergency victims. This narrative review explored the potential use of hotels as alternative care sites and the legal implications associated with such utilization. The results confirmed a high potential for using hotels as alternate care sites. However, data concerning its practical and legal implications are insufficient. This paper suggests further research to investigate the criteria for utilizing hotels in this capacity, including admission guidelines for disaster victims and relevant ethical and legal considerations.

The socioeconomic impact of disability progression in multiple sclerosis: A retrospective cohort study of the German NeuroTransData (NTD) registry.

Multiple sclerosis (MS) is a progressively debilitating neurologic disease that poses significant costs to the healthcare system and workforce. To evaluate the impact of MS disease progression on societal costs and quality of life (QoL) using data from the German NeuroTransData (NTD) MS registry. Cross-sectional cohort study. The cost cohort included patients with MS disability assessed using Expanded Disability Status Scale (EDSS) in 2019 while the QoL cohort included patients assessed using EDSS and EuroQol-5 Dimension 5-Levels between 2009 and 2019. Direct and indirect medical, and non-medical resource use was quantified and costs derived from public sources. Within the QoL cohort (n = 9821), QoL worsened with increasing EDSS. Within the cost cohort (n = 7286), increasing resource use with increasing EDSS was observed. Societal costs per patient, excluding or including disease-modifying therapies, increased from €5694 or €19,315 at EDSS 0 to 3.5 to €25,419 or €36,499 at EDSS 4 to 6.5, and €52,883 or €58,576 at EDSS 7 to 9.5. In multivariate modeling, each 0.5-step increase in EDSS was significantly associated with increasing costs, and worsening QoL. This study confirms the major socioeconomic burden associated with MS disability progression. From a socioeconomic perspective, delaying disability progression may benefit patients and society.

Economic evaluation of Motor Neuron Diseases: a nationwide cross-sectional analysis in Germany

Background and objectivesMotor Neuron Diseases (MND) are rare diseases but have a high impact on affected individuals and society. This study aims to perform an economic evaluation of MND in Germany.MethodsPrimary patient-reported data were collected including individual impairment, the use of medical and non-medical resources, and self-rated Health-Related Quality of Life (HRQoL). Annual socio-economic costs per year as well as Quality-Adjusted Life Years (QALYs) were calculated.Results404 patients with a diagnosis of Amyotrophic Lateral Sclerosis (ALS), Spinal Muscular Atrophy (SMA) or Hereditary Spastic Paraplegia (HSP) were enrolled. Total annual costs per patient were estimated at 83,060€ in ALS, 206,856€ in SMA and 27,074€ in HSP. The main cost drivers were informal care (all MND) and disease-modifying treatments (SMA). Self-reported HRQoL was best in patients with HSP (mean EuroQoL Five Dimension Five Level (EQ-5D-5L) index value 0.67) and lowest in SMA patients (mean EQ-5D-5L index value 0.39). QALYs for patients with ALS were estimated to be 1.89 QALYs, 23.08 for patients with HSP and 14.97 for patients with SMA, respectively. Cost-utilities were estimated as follows: 138,960€/QALY for ALS, 525,033€/QALY for SMA, and 49,573€/QALY for HSP. The main predictors of the high cost of illness and low HRQoL were disease progression and loss of individual autonomy.ConclusionAs loss of individual autonomy was the main cost predictor, therapeutic and supportive measures to maintain this autonomy may contribute to reducing high personal burden and also long-term costs, e.g., care dependency and absenteeism from work.

Social Prescription Interventions Addressing Social Isolation and Loneliness in Older Adults: Meta-Review Integrating On-the-Ground Resources.

Social prescription programs represent a viable solution to linking primary care patients to nonmedical community resources for improving patient well-being. However, their success depends on the integration of patient needs with local resources. This integration could be accelerated by digital tools that use expressive ontology to organize knowledge resources, thus enabling the seamless navigation of diverse community interventions and services tailored to the needs of individual users. This infrastructure bears particular relevance for older adults, who experience a range of social needs that impact their health, including social isolation and loneliness. An essential first step in enabling knowledge mobilization and the successful implementation of social prescription initiatives to meet the social needs of older adults is to incorporate the evidence-based academic literature on what works, with on-the-ground solutions in the community. This study aims to integrate scientific evidence with on-the-ground knowledge to build a comprehensive list of intervention terms and keywords related to reducing social isolation and loneliness in older adults. A meta-review was conducted using a search strategy combining terms related to older adult population, social isolation and loneliness, and study types relevant to reviews using 5 databases. Review extraction included intervention characteristics, outcomes (social [eg, loneliness, social isolation, and social support] or mental health [eg, psychological well-being, depression, and anxiety]), and effectiveness (reported as consistent, mixed, or not supported). Terms related to identified intervention types were extracted from the reviewed literature as well as descriptions of corresponding community services in Montréal, Canada, available from web-based regional, municipal, and community data sources. The meta-review identified 11 intervention types addressing social isolation and loneliness in older adults by either increasing social interactions, providing instrumental support, promoting mental and physical well-being, or providing home and community care. Group-based social activities, support groups with educational elements, recreational activities, and training or use of information and communication technologies were the most effective in improving outcomes. Examples of most intervention types were found in community data sources. Terms derived from the literature that were the most commonly congruent with those describing existing community services were related to telehealth, recreational activities, and psychological therapy. However, several discrepancies were observed between review-based terms and those addressing the available services. A range of interventions found to be effective at addressing social isolation and loneliness or their impact on mental health were identified from the literature, and many of these interventions were represented in services available to older residents in Montréal, Canada. However, different terms were occasionally used to describe or categorize similar services across data sources. Establishing an efficient means of identifying and structuring such sources is important to facilitate referrals and help-seeking behaviors of older adults and for strategic planning of resources.

Social determinants of health—to screen or not to screen? How, when, and what to do next are really the questions.

169 Background: Social determinants of health (SDOH) have a considerable impact on the health outcomes of chronically ill patients. Although the implementation of social needs screening in clinical settings has been studied, patient perspectives of discussing SDOH with health care providers has not been thoroughly investigated. This study sought to explore the experience and perspectives of limited-resource patients with cancer regarding SDOH discussions. Methods: This cross-sectional analysis used data from a nationwide survey distributed in May 2022 by Patient Advocate Foundation (PAF). The survey was fielded via email to patients who received PAF services in 2020. Inclusion criteria included a valid email, aged >19 and a current or previous cancer treatment. Frequencies and percentages were calculated for categorical variables. Questions focused on individual experiences with SDOH screening, conversations and expectation around information use and assistance. Results: A total of 481 survey respondents with cancer completed the survey. Most respondents were female (73%), aged 56-75 (52%), household income < $48,000 (66%), and insured (98%); 38% were Black, Indigenous or Persons of Color (BIPOC). The most common cancer types were hematologic (42%) and breast (34%); 30% were diagnosed < 2 years prior and 82% received treatment in past 6 months. One quarter (26%) stopped or delayed care in past 12 months due to cost and 66% reported that social needs interfered with treatment in past 12 months. Two-thirds (64%) reported conversations about social needs in the past 12 months. Transportation (36%), food insecurity (32%) and personal safety were the most cited nonmedical needs. Conversations were most often initiated by nurse/PA (30%), social worker (30%) or doctor (29%) and patients reported being ‘extremely comfortable’ being asked these questions by the same providers; doctor (54%), nurse/PA (48%), social worker (46%). Over half (53%) reported comfort with SDOH information being part of their medical record; 61% wanted to be asked SDOH questions face-to-face. If a social need was identified, patients trusted patient advocacy groups (64%), social worker (61%) and charitable non-profit organizations (49%) to help them locate assistance. Only 21% indicated knowledge of availability of needs navigation services. Conclusions: Although patients are open to sharing social issues with providers, our data suggests that conversations may not be routinely initiated in clinical settings. There is also a need to increase awareness of resources in response to SDOH screening. Challenges in trust and privacy persist when disclosing this information. Achieving health equity requires culturally responsive strategies to embed screening and referrals into workflow to ensure cancer patients’ needs are identified and they are linked to appropriate nonmedical resources and services.

Systematic review of social prescribing and older adults: where to from here?

ObjectiveSocial prescribing is a person-centred model of care with emphases on lessening the impact of unmet social needs, supporting the delivery of personalised care, and reducing non-medical resource use in...

The historiography of a profession: The societal and political drivers of the health information management profession in Australia.

Health information permeates healthcare delivery from point-of-care, across the continuum of care and throughout the healthcare system's policy, population health, research, planning and funding arenas. Health information managers (HIMs) expertly manage that information. This commentary theorises the health information management profession for the first time. Its purpose is to identify and contextualise, via a historiographical account, the societal and political drivers that have shaped contemporary Australian health information management and HIMs' scientific work. It seeks to build our knowledge of the socio-political influences on the profession's emergence and development, and the projected drivers of its future. Eight critical, socio-political drivers were identified and are addressed in temporaneous order. Scientific medicine has reflected the influences on medicine in the past century and a half of the medical record and other technologies, laboratory-based sciences, evidence-based medicine and evidence-based health. Standardisation has underpinned and guided the profession's practice. The hegemony of non-medical healthcare managers and resource- and performance-related accountabilities emerged in the 1960s, as did the efficiencies of bureaucratisation in healthcare and post-bureaucratic shifts to textualisation and technogovernance. Technologisation has driven constant change in health information management, as have the forces of the fast-paced risk society. Since the 1980s, the health consumer movement has propelled regulatory mechanisms that accord patients' access rights to their medical records and mandate information privacy protections. Finally, a nascent commodification of health information has emerged. These forces exert ongoing impacts on the profession. They will, we conclude, singularly and collectively continue to shape its discourses and direction.

Costs and Health-Related Quality of Life in Patients With NMO Spectrum Disorders and MOG-Antibody-Associated Disease: CHANCENMO Study.

Background and ObjectivesTo evaluate costs and health-related quality of life (HRQoL) of neuromyelitis optica spectrum disorders (NMOSD) and myelin oligodendrocyte glycoprotein antibody–associated disease (MOGAD).MethodsIn this multicenter cross-sectional study, data on consumption of medical and nonmedical resources and work ability were assessed via patient questionnaires. Costs were analyzed in Euros for 2018 from the societal perspective. HRQoL was captured by the EuroQoL Group 5 Dimension 5 Level Scale (EQ-5D-5L) questionnaire. Clinical data were retrieved from the Neuromyelitis Optica Study Group (NEMOS) database.ResultsTwo hundred twelve patients (80% women, median age 50 [19–83] years, median disease duration 7 [0–43] years, median Expanded Disability Status Scale [EDSS] score 3.5 [0–8.5], 66% aquaporin-4 immunoglobulin G [IgG] positive, 22% MOG IgG positive, 12% double seronegative) were analyzed. The mean total annual per capita cost of illness accounted for €59,574 (95% CI 51,225–68,293 or US dollars [USD] 70,297, 95% CI 60,445–80,586), and the mean index value of the EQ-5D-5L was 0.693 (95% CI 0.65–0.73). The most important cost drivers were informal care costs (28% of total costs), indirect costs (23%), and drugs (16%), especially immunotherapeutics. Costs showed a positive correlation with disease severity (ρ = 0.56, 95% CI 0.45–0.65); in the EDSS score 6.5 to 8.5 subgroup, the mean annual costs were €129,687 (95% CI 101,946–160,336 or USD 153,031, 95% CI 120,296–189,196). The HRQoL revealed a negative correlation to disease severity (ρ = −0.69, 95% CI −0.76 to −0.61); in the EDSS score 6.5 to 8.5 subgroup, the EQ-5D-5L mean index value was 0.195 (95% CI 0.13–0.28). Neither antibody status nor disease duration influenced the total annual costs or HRQoL.DiscussionThese German data from the era without approved preventive immunotherapies show enormous effects of the diseases on costs and quality of life. An early and cost-effective therapy should be provided to prevent long-term disability and to preserve quality of life.

Evaluation of Clinical Practice Guidelines for Rare Diseases in Japan.

The insufficient quantity and quality of clinical epidemiological evidence in the field of rare diseases have posed methodological challenges to develop clinical practice guidelines (CPGs). Guideline development groups struggle to provide patients and their families with beneficial guidance, such as that for medical care and in complex circumstances. Motivated by the challenges, we focused on information on resources for supporting the daily and social life to improve the CPGs for users. We aimed to assess the methodological quality of CPGs for rare diseases in Japan and to evaluate information on resources to support the daily and social life in the CPGs. We conducted a systematic search using PubMed, three electronic Japanese databases, and two hand-searched sources in Japan. The Appraisal of Guidelines for Research and Evaluation (AGREE) II instrument with six domains was used to assess the methodological quality of the CPGs. A content analysis of the CPG text was conducted using five keywords as information on non-medical resources, e.g., "Intractable Disease Consultation Support Center," "Japan Intractable Disease Information Center," and "Patient Association." A total of 55 CPGs met the inclusion criteria. Among four domains of AGREE II with low scores (Stakeholder Involvement, Rigor of Development, Applicability, and Editorial Independence), Rigor of Development had the lowest median score. As for information on non-medical resources, 41 CPGs included at least 1 of the 5 keywords, while 14 CPGs included none. At the Rigor of Development domain, methodological challenges may have resulted in an insufficient description of items regarding the translation evidence to recommendations. As the sufficiency of five keywords as information on non-medical resources could be improved, the information will be advocative as clues to provide pragmatic guidance, particularly for rare diseases with limited medical evidence.

“Childbearing” as a Direction of the Inner Policy of Late 16th-Century Russia

The authors analyze the approaching dynastic crisis in late 16th-century Russia as a special direction of the policy of Tsar Fedor Ioannovich’s government. The policy was concerned, firstly, with the belittling of the dynastic rights of Dmitry of Uglich, and, secondly, with the attempts of Fedor and his wife Irina Fedorovna to bear their own heir. The latter problem was addressed with the use of all medical and non-medical resources available in the late 16th century: from secret diplomacy, invitation of foreign doctors and an English midwife to Russia to votive building, pilgrimage to monasteries, creating icons dedicated to saints who patron childbearing, and so on. Thirdly, the concentration of the ruling couple on pilgrimage, church building etc., for which much money and time was needed, was connected with the activity of Boris Godunov as the real head of the government. The collapse of this policy after the death of Princess Feodosia was the reason why Boris Godunov attempted to found a new, Godunov dynasty on the Muscovite throne.

Quality Management in Healthcare System; where we stand?

Quality Management in Healthcare System; where we stand?

Exploring experiences of hypertrophic cardiomyopathy diagnosis, treatment, and impacts on quality of life among middle-aged and older adults: An interview study

BackgroundLimited studies exist that describe diagnosis, treatment, and management experiences of patients with hypertrophic cardiomyopathy (HCM). This study's purpose is to characterize patient experiences related to symptom onset, diagnosis, symptom management, support from healthcare professionals, and impacts on daily living. MethodsSemi-structured interviews were conducted using open-ended questions and question probes were conducted with adults aged ≥18 years diagnosed with HCM ≥1 year prior. Interview recordings were transcribed verbatim and inductive and deductive thematic analyses were performed. ResultsA total of 32 interviews were conducted. The majority of participants were female (53.1%), aged ≥45 years (90.6%), white (96.9%), and non-Hispanic (96.9%). Participants with longer time to HCM diagnosis described having atypical HCM symptoms, denial of their own symptoms, and experiences of misdiagnoses. For HCM information and support, participants utilized personal healthcare professionals as well as non-medical resources. Participants described experiences of anxiety, denial, and upset feelings about their diagnosis, but also gratitude, acceptance, and increased mindfulness toward healthy habits. Individuals reported making changes in daily activities because of reduced physical capacity and making changes in lifestyle choices because of desire to be close to HCM specialists. Over time, participants also described becoming less fearful through utilization of available resources and treatment options. ConclusionsThe diverse but often challenging experiences of individuals with HCM suggest that increasing availability and utilization of HCM patient resources may be effective at reducing the unfavorable physical and psychological impacts of HCM. Common reports of misdiagnoses resulting in delayed HCM diagnosis also indicate a need for HCM-related educational opportunities for healthcare professionals.

Abstract 2550: Participant's satisfaction with the cancer community awareness access research and education (C-CARE) project at urban and rural sites

Abstract Introduction: The cancer-Community Awareness Access Research & Education (c-CARE) project includes a series of cancer-related educational sessions that focus on educating the enrolled participants about cancers that are either preventable or have the potential for early detection to positively impact cancer outcomes. One of the important indicators of success is the level of satisfaction with the program expressed by the study participants who were navigated to needed medical or non-medical community resources through the program. Methods: The study (n=548, 98 rural (17.9%),450 urban (82.1%), provided education, cancer screening, and addressed perceived barriers and self-efficacy to accessing early cancer detection resources, while providing a list of community-based resources. Inclusion criteria included adults with 21-80 years of age primarily living in small urban and rural GA or SC counties. The study occurred in 9 urban AA churches, 3 rural AA churches, 3 community clinics and one Community Center. The responses to each question in the satisfaction survey were summarized using descriptive analysis (frequency, percent, and p-value). Results: A majority of respondents reported satisfaction with the program (86.5%) and that they would recommend the program to others (99.8%). Approximately, one-third (31.1%) stated that they used one or more of the c-CARE community resources provided. Of those who used c-CARE resources, 74.3% participated in Lung Cancer Screening, 58.3% used the Tobacco Cessation Clinic, and 44.3% used Community Resources. Almost all of the respondents stated that they were satisfied with the c-CARE resources (82.3%). Significantly, more rural participants reported accessing Lung Cancer Screening (100%, p < 0.03), the Tobacco Cessation Clinic (100%, p < 0.04), and community resources (100%, p < 0.01). There were no significant differences between the rural and urban cohorts in program satisfaction, if they would recommend the program to others, used one or more of the c-CARE resources provided, or were satisfied with the resources provided. Conclusion: These results demonstrate increased need in both rural and urban communities for access to cancer screening and resources. Participant satisfaction is an important outcome measure for vulnerable population needs and experiences within their community. The c-CARE project was able to successfully provide education, cancer screening, and navigation to community cancer prevention and support resources to both urban and rural populations with demonstrated satisfaction and success. Citation Format: Ghadeer Albashir, Samantha Sojourner, Marlo Vernon, Justin Moore, Stephen Looney, Martha Tingen. Participant's satisfaction with the cancer community awareness access research and education (C-CARE) project at urban and rural sites [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2021; 2021 Apr 10-15 and May 17-21. Philadelphia (PA): AACR; Cancer Res 2021;81(13_Suppl):Abstract nr 2550.

Phoenix Cancer Support Network provides non-medical assistance to reduce disparities among cancer patients.

e18502 Background: Social determinants of health (SDOH) can lead to gaps in supportive care resources and services available to cancer patients. Established in 2017, Phoenix Cancer Support Network (PCSN) is a non-profit that endeavors to empower cancer patients (clients) throughout their cancer journey by providing support, guidance, and direction while promoting and protecting the unique needs, lifestyle, and abilities of each client and their caregivers. In this study, we investigate the non-medical needs of patients that engaged with PCSN for assistance and the increases in services provided over time. Methods: All patients that applied for and were eligible to receive assistance from PCSN were included. Eligibility requirements include patients primarily residing in Arizona and are receiving cancer therapy. Non-medical services offered included transportation, groceries and meals, housecleaning, other domestic services (e.g., child care or dog walking), financial support, and household goods. Summary statistics were conducted. Results: Between December 2017 and November 2020, 188 clients (117 were female) were offered assistance by PCSN. The median age was 58 (range 23-92). The number of clients assisted was 2 in 2017, 81 in 2018, 58 in 2019, and 38 in 2020. 145 clients had a solid tumor and 131 were actively undergoing cancer treatment when seeking PCSN assistance. Of 67 clients with available income data, 55 clients earned less than $25,000/year including 41 clients that were unemployed and 21 clients without insurance coverage. Most frequently requested services were transportation (49%), groceries and meals (41%), financial support (34%), housecleaning (26%), and other domestic services (10%). Of those requested services, PCSN was able to provide assistance for 76% of transportation, 62% of meal services, 79% of financial assistance, 50% of housecleaning, and 100% of other domestic services requested. Details of total expenditures for these services by year are depicted in the Table.Transportation service has been the largest expenditure overall, followed by other domestic services and groceries and meals. Conclusions: PCSN clients have needs that span multiple non-medical resources, reflecting potential sources of improvement in reducing disparities in the cancer community. At least 25% of clients requesting non-medical assistance reported annual income below $25,000/year. The amount of services provided has increased yearly, particularly transportation services. Additional study and follow-up to understand these service gaps and the impact of SDOH is warranted.[Table: see text]

The Multiple Sclerosis Health Resource Utilization Survey

In health economic studies, valid and reliable cost data are essential to reach meaningful conclusions. In the case of multiple sclerosis (MS), such studies are often based on primary data for which the underlying survey instruments have not been published. In addition, heterogeneous methods make the comparability and interpretation of such study results difficult. To standardize health economic studies in MS, the Multiple Sclerosis Health Resource Utilization Survey (MS-HRS) was developed, validated and published in a freely accessible format. This review focuses on the MS-HRS. We report on the methodological background of studies on the assessment of cost of illness as well as MS-HRS-based results on the costs of disease dynamics in people with MS. This article is based on a selective literature review on the MS-HRS as well as on health economic aspects of cost assessment. The MS-HRS provides a holistic assessment of direct medical, direct non-medical and indirect resource utilization. Within indirect costs, we considered absenteeism, either short term (sick leave) or long term (disability pension), but also presenteeism, which refers to impaired performance during work. Resources were valued at the societal opportunity cost or the best possible approximation. First analyses based on MS-HRS showed that, in addition to inpatient disease severity and clinical course, disease dynamics in form of relapses and progression have enormous socioeconomic implications. Valid cost data bring transparency to the economic consequences of diseases. In addition to clinical data, cost data can be used to determine cost-effectiveness and thus reveal opportunities for more efficient patient care. For the case of MS, a freely accessible tool is available for cost assessments.

Getting what is needed, when it's needed: Sharing information, knowledge, and know-how in a Collaborative Learning Health System.

BackgroundCollaborative Learning Health Systems (CLHS) improve outcomes in part by facilitating collaboration among all stakeholders. One way to facilitate collaboration is by creating conditions for the production and sharing of medical and non‐medical resources (information, knowledge, and knowhow [IKK]) so anybody can get “what is needed, when it's needed” (WINWIN) to act in ways that improve health and healthcare. Matching resources to needs can facilitate accurate diagnosis, appropriate prescribing, answered questions, provision of emotional and social support, and uptake of innovations.ObjectivesWe describe efforts in ImproveCareNow, a CLHS improving outcomes in pediatric inflammatory bowel disease (IBD), to increase the number of patients and families creating and accessing IKK, and the challenges faced in that process.MethodsWe applied tactics such as outreach through trusted messengers, community organizing, and digital outreach such as sharing resources on our website, via social media, and email to increase the number of people producing, able to access, and accessing IKK. We applied an existing measurement system to track our progress and supplemented this with community feedback.ResultsIn August of 2017 we identified and began measuring specific actions to track community growth. The number of patients and families producing IKK has increased by a factor of 2.7, using resources has increased by a factor of 4.1 and aware of resources as increased by a factor of 4.0. We identified challenges to measurement and scaling.ConclusionsIt is possible to intentionally increase the number of patients and caregivers engaged with a CHLS to produce and share resources to improve their health.

Caregivers' Experience at an Integrated Memory Care Clinic.

The Integrated Memory Care Clinic is a patient-centered medical home led by advanced practice RNs (APRNs) who provide dementia care and primary care simultaneously and continuously. We explored the experiences of 12 informal caregivers of persons living with dementia during their first year at the Clinic. Data were analyzed via directed content analysis. Caregivers described the Clinic as "the only place you should go to for dementia [care]." Caregivers felt a sense of belonging to the Clinic, valued APRNs' competence and staff's dedication, and round-the-clock telephone access to APRNs. Caregivers also acknowledged that "we're all out here swimming on our own." They expressed their sense of being overwhelmed and needing more services and medical and non-medical resources, and more prognostic information on dementia. Although the Clinic is beneficial for caregivers, caregiving demands exceed the supply of services and resources at the Clinic. [Research in Gerontological Nursing, 14(2), 69-78.].

Expert stakeholders’ perspectives on a Data-to-Care strategy for improving care among HIV-positive individuals incarcerated in jails

ABSTRACT Data-to-Care (D2C) uses surveillance data (e.g., laboratory, Medicaid billing) to identify out-of-care HIV-positive persons to re-link them to care. Most US states are implementing D2C, yet few studies have explored stakeholders’ perspectives on D2C, and none have addressed these perspectives in the context of D2C in jail. This article reports findings from qualitative, semi-structured interviews conducted with expert stakeholders regarding their perspectives on the ethical challenges of utilizing D2C to understand and improve continuity of care among individuals incarcerated in jails. Participants included 47 professionals with expertise in ethics and privacy, public health and HIV care, the criminal justice system, and community advocacy. While participants expressed a great deal of support for extending D2C to jails, they also identified many possible risks. Stakeholders discussed many issues specific to D2C in jails, such as heightened stigma in the jail setting, the need for training of jail staff and additional non-medical community-based resources, and the high priority of this vulnerable population. Many experts suggested that the actual likelihood of benefits and harms would depend on contextual details. Implementation of D2C in jails may require novel strategies to minimize risk of disclosing out-of-care patients’ HIV status.