Demandas clínicas e intervenções de enfermagem em consultas gerontológicas: Revisão integrativa / Demandas Clínicas e intervenciones de Enfermería en consultas gerontológicas: Una revisión integrativa / Clinical demands and nursing interventions in gerontological consultations: An integrative review

Resumen Introdução: A criação de guias que unificam as demandas clínicas prevalentes em consultas de enfermagem gerontológica e, das suas respectivas intervenções, se faz presente, devido a heterogeneidade das patologias emergentes no processo de envelhecimento, que irão precisar de cuidados. Objetivo: Identificar as demandas clínicas em consultas de enfermagem gerontológica e, as intervenções implementadas pelos(as) enfermeiros(as). Método: Revisão integrativa de pesquisas originais, publicadas entre 2018 e 2022, em inglês, espanhol e português, disponíveis nas bases de dados Scopus, MEDLINE/PubMed, BIREME/LILACS/BDENF/IBECS/BVS, SciELO e Google Scholar, pelos descritores DeCS/MESH: "Idoso"; "Enfermagem no Consultório"; "Enfermagem Geriátrica" e "Geriatria". O Rating System for the Hierarchy of Evidence for Intervention foi usado para determinar o nível de evidência da amostra final. Foram excluídos editoriais, estudos de revisão e artigos duplicados. A análise dos dados se deu pela leitura analítica e interpretativa, guiadas por um checklist. Resultados: Oito artigos foram selecionados e trouxeram demandas clínica tais como: o déficit no autocuidado para banho; autonegligência; fadiga; risco de integridade da pele prejudicada; desesperança; tristeza e depressão. As intervenções se relacionaram ao incentivo ao autocuidado; otimização dos medicamentos; estímulo a atividade física; cuidados com a pele; aconselhamento; musicoterapia e reabilitação psicossocial. Conclusão: Demandas clínicas atendidas nas consultas de enfermagem gerontológica possuem grande variação, com prevalência no domínio atividade/repouso, tais como intervenções voltadas para o tratamento e prevenção de doenças e ações visando a promoção da saúde, tendo o domínio comportamental mais expressivo.

Resumen Introducción: La creación de guías que unifiquen las demandas clínicas prevalentes en las consultas de enfermería gerontológica y sus respectivas intervenciones es necesaria, debido a la heterogeneidad de patologías emergentes en el proceso de envejecimiento que requerirán cuidados. Objetivo: Identificar las demandas clínicas en las consultas de enfermería gerontológica y las intervenciones implementadas por el personal de enfermería. Método: Revisión integrativa de investigaciones originales, publicadas entre 2018 y 2022, en inglés, español y portugués, en las bases de datos Scopus, MEDLINE/PubMed, BIREME/LILACS/BDENF/IBECS/BVS, SciELO y Google Scholar. Se utilizaron los descriptores DeCS/MESH: "Idoso"; "Enfermagem no Consultório"; "Enfermagem Geriátrica" e "Geriatria". Para determinar el nivel de evidencia de la muestra final, se usó el Rating System for the Hierarchy of Evidence for Intervention. Además, se excluyeron los editoriales, los estudios de revisión y los artículos duplicados. Los datos se analizaron mediante lectura analítica e interpretativa, guiada por una lista de verificación. Resultados: Se seleccionaron ocho artículos que aportaron demandas clínicas como déficit en el autocuidado para el baño, autodescuido, fatiga, riesgo integridad de la piel perjudicada; desesperanza, tristeza y depresión. Las intervenciones estaban orientadas al fomento del autocuidado, la optimización de la medicación, el fomento de la actividad física, el cuidado de la piel, el asesoramiento, la musicoterapia y la rehabilitación psicosocial. Conclusión: Las demandas clínicas atendidas en las consultas de enfermería gerontológica son muy variadas, con predominio en el dominio actividad/reposo, como intervenciones dirigidas al tratamiento y prevención de enfermedades y acciones dirigidas a la promoción de la salud, siendo más expresivo el dominio conductual.

Abstract Introduction: The creation of guidelines that unify the prevalent clinical demands from gerontological nursing consultations and their corresponding interventions are necessary due to the heterogeneity of emerging pathologies in the aging process that will require nursing care. Objective: To identify clinical demands in gerontological nursing consultations and the interventions implemented by nurses. Method: An integrative review of original research published from 2018 and 2022, in English, Spanish, and Portuguese, in Scopus, MEDLINE/PubMed, BIREME/lilacs/BDENF/IBECS/VHL, SciELO, and Google Scholar databases, using the DeCS/MESH descriptors: "Elderly", "Nursing in the Office", "Geriatric Nursing", and "Geriatrics". The Rating System for the Hierarchy of Evidence for Intervention was used to determine the level of evidence of the final sample. Editorials, review studies, and duplicate articles were excluded. The data were analyzed by analytical and interpretative reading, guided by a checklist. Results: Eight articles were selected that showed clinical demands such as deficits in self-care for bathing, self-negligence, fatigue, risk of damaged skin integrity, hopelessness, sadness, and depression. Interventions were related to encouraging self-care, medication optimization, encouragement of exercise, skin care, counseling, music therapy, and psychosocial rehabilitation. Conclusion: There are many different clinical demands in gerontological nursing consultations, especially associated with the domain of activity/rest. These include interventions to treat and prevent diseases, and actions aimed at health promotion, in most cases associated with the behavioral domain.

Strategies to Improve Patient-Centered Care for Drug Use-Associated Infective Endocarditis: JACC Focus Seminar 2/4.

Drug use-associated infective endocarditis (DUA-IE) is a major cause of illness and death for people with substance use disorder (SUD). Investigations to date have largely focused on advancing the care of patients with DUA-IE and included drug use disorder treatment, decisions about surgery, and choice of antibiotics during the period of hospitalization. Transitions from hospital to outpatient care are relatively unstudied and frequently a key factor of uncontrolled infection, continued substance use, and death. In this paper, we review the evidence supporting cross-disciplinary care for people with DUA-IE and highlight domains that need further clinician, institutional, and research investment in clinicians and institutions. We highlight best practices for treating people with DUA-IE, with a focus on addressing health disparities, meeting health-related social needs, and policy changes that can support care for people with DUA-IE in the hospital and when transitioning to the community.

Person-centered care assessment tool with a focus on quality healthcare: a systematic review of psychometric properties.

BACKGROUND: The person-centered care (PCC) approach plays a fundamental role in ensuring quality healthcare. The Person-Centered Care Assessment Tool (P-CAT) is one of the shortest and simplest tools currently available for measuring PCC. The objective of this study was to conduct a systematic review of the evidence in validation studies of the P-CAT, taking the "Standards" as a frame of reference. METHODS: First, a systematic literature review was conducted following the PRISMA method. Second, a systematic descriptive literature review of validity tests was conducted following the "Standards" framework. The search strategy and information sources were obtained from the Cochrane, Web of Science (WoS), Scopus and PubMed databases. With regard to the eligibility criteria and selection process, a protocol was registered in PROSPERO (CRD42022335866), and articles had to meet criteria for inclusion in the systematic review. RESULTS: A total of seven articles were included. Empirical evidence indicates that these validations offer a high number of sources related to test content, internal structure for dimensionality and internal consistency. A moderate number of sources pertain to internal structure in terms of test-retest reliability and the relationship with other variables. There is little evidence of response processes, internal structure in measurement invariance terms, and test consequences. DISCUSSION: The various validations of the P-CAT are not framed in a structured, valid, theory-based procedural framework like the "Standards" are. This can affect clinical practice because people's health may depend on it. The findings of this study show that validation studies continue to focus on the types of validity traditionally studied and overlook interpretation of the scores in terms of their intended use.

Refugee women's and providers' perceptions of person-centered maternity care: a qualitative study in two refugee camps in Chad.

BACKGROUND: Globally, mistreatment of women during labor and delivery is a common human rights violation. Person-centered maternity care (PCMC), a critical component of quality of care, is respectful and responsive to an individual's needs and preferences. Factors related to poor PCMC are often exacerbated in humanitarian settings. METHODS: We conducted a qualitative study to understand Sudanese refugee women's experiences, including their perceptions of quality of care, during labor and delivery at the maternities in two refugee camps in eastern Chad, as well as maternity health workers' perceptions of PCMC and how they could be better supported to provide this. In-depth interviews were conducted individually with 22 women who delivered in the camp maternities and five trained midwives working in the two maternities; and in six dyads with a total of 11 Sudanese refugee traditional birth attendants and one assistant midwife. In addition, facility assessments were conducted at each maternity to determine their capacity to provide PCMC. RESULTS: Overall, women reported positive experiences in the camp maternities during labor and delivery. Providers overwhelmingly defined respectful care as patient-centered and respect as being something fundamental to their role as health workers. While very few reported incidents of disrespect between providers and patients in the maternity, resource constraints, including overwork of the providers and overcrowding, resulted in some women feeling neglected. CONCLUSIONS: Despite providers' commitment to offering person-centered care and women's generally positive experiences in this study, one of few that explored PCMC in a refugee camp, conflict and displacement exacerbates the conditions that contribute to mistreatment during labor and delivery. Good PCMC requires organizational emphasis and support, including adequate working conditions and ensuring suitable resources so health workers can effectively perform.

Integrated lymphoedema and tissue viability service: improving patient and wound outcomes.

This article will focus on the integration of tissue viability and lymphoedema services to improve outcomes for patients with leg ulceration. It will highlight why there is a need for lymphoedema specialist knowledge within the care of patients with leg ulceration and how the services are closely aligned. Lymphoedema can adversely affect wound healing and the article will provide case studies that highlight how developing a hybrid tissue viability and lymphoedema clinician or integration of the specialists can provide effective patient-centred care at reduced cost. The article offers potential strategies and suggestions on how to address inequalities in care and how to improve service provision.

Patient-centered respectful maternity care: a factor analysis contextualizing marginalized identities, trust, and informed choice.

BACKGROUND: Increasing rates of maternal mortality and morbidity, coupled with ever-widening racial health disparities in maternal health outcomes, indicate that radical improvements need to be made in the delivery of maternity care. This study explored the provision of patient-centered maternity care from the perspective of pregnant and postpartum people; experiences of respect and autonomy were examined through the multi-dimensional contexts of identity, relational trust, and protection of informed choices. METHODS: We conducted primary data collection among individuals who experienced a pregnancy in the five years preceding the survey (N = 484) using the validated Mothers on Respect Index (MORi) and Mothers Autonomy in Decision Making (MADM) scale. We conducted an exploratory factor analysis (EFA) which produced three factor variables: trust, informed choice, and identity. Using these factor variables as dependent variables, we conducted bivariate and multivariate analysis to examine the relationship between these factor variables and social marginalization, as measured by race, disability, justice-involvement, and other social risk factors, such as food and housing insecurity. RESULTS: Results of our bivariate and multivariate models generally confirmed our hypothesis that increased social marginalization would be associated with decreased experiences of maternity care that was perceived as respectful and protective of individual autonomy. Most notably, AI/AN individuals, individuals who are disabled, and individuals who had at least one social risk factor were more likely to report experiencing identity-related disrespect and violations of their autonomy. CONCLUSIONS: In light of the findings that emphasize the importance of patient identity in their experience in the healthcare system, patient-centered and respectful maternity care must be provided within a broader social context that recognizes unequal power dynamics between patient and provider, historical trauma, and marginalization. Provider- and facility-level interventions that improve patient experiences and health outcomes will be more effective if they are contextualized and informed by an understanding of how patients' identities and traumas shape their healthcare experience, health-seeking behaviors, and potential to benefit from clinical interventions and therapies.

Dimensions of patient-centred care from the perspective of patients and healthcare workers in hospital settings in sub-Saharan Africa: A qualitative evidence synthesis.

INTRODUCTION: The United States Institute of Medicine defines patient centred care (PCC), a core element of healthcare quality, as care that is holistic and responsive to individual needs. PCC is associated with better patient satisfaction and improved clinical outcomes. Current conceptualizations of PCC are mainly from Europe and North America. This systematic review summarises the perceived dimensions of PCC among patients and healthcare workers within hospitals in sub-Saharan Africa (SSA). METHODS: Without date restrictions, searches were done on databases of the Web of Science, Cochrane Library, PubMed, Embase, Global Health, and grey literature, from their inception up to 11th August 2022. Only qualitative studies exploring dimensions or perceptions of PCC among patients, doctors and/or nurses in hospitals in (SSA) were included. Review articles and editorials were excluded. Two independent reviewers screened titles and abstracts, and conducted full-text reviews with conflicts resolved by a third reviewer. The CASP (critical appraisal skills program) checklist was utilised to assess the quality of included studies. The framework synthesis method was employed for data synthesis. RESULTS: 5507 articles were retrieved. Thirty-eight studies met the inclusion criteria, of which 17 were in the specialty of obstetrics, while the rest were spread across different fields. The perceived dimensions reported in the studies included privacy and confidentiality, communication, shared decision making, dignity and respect, continuity of care, access to care, adequate infrastructure and empowerment. Separate analysis of patients' and providers' perspective revealed a difference in the practical understanding of shared-decision making. These dimensions were summarised into a framework consisting of patient-as-person, access to care, and integrated care. CONCLUSION: The conceptualization of PCC within SSA was largely similar to findings from other parts of the world, although with a stronger emphasis on access to care. In SSA, both relational and structural aspects of care were significant elements of PCC. Healthcare providers mostly perceived structural aspects such as infrastructure as key dimensions of PCC. TRIAL REGISTRATION: PROSPERO Registration number CRD42021238411.

Development of a person-centred care approach for persons with chronic multimorbidity in general practice by means of participatory action research.

BACKGROUND: The management of persons with multimorbidity challenges healthcare systems tailored to individual diseases. A person-centred care approach is advocated, in particular for persons with multimorbidity. The aim of this study was to describe the co-creation and piloting of a proactive, person-centred chronic care approach for persons with multimorbidity in general practice, including facilitators and challenges for successful implementation. METHODS: A participatory action research (PAR) approach was applied in 13 general practices employing four subsequent co-creation cycles between 2019 and 2021. The target population included adults with ≥3 chronic conditions. Participating actors were general practitioners (GPs), practice nurses (PNs), patients (target group), the affiliated care cooperation, representatives of a health insurer and researchers. Each cycle consisted of a try-out period in practice and a reflective evaluation through focus groups with healthcare providers, interviews with patients and analyses of routine care data. In each cycle, facilitators, challenges and follow-up actions for the next cycle were identified. Work satisfaction among GPs and PNs was measured pre and at the end of the final co-creation cycle. RESULTS: Identified essential steps in the person-centred chronic care approach include (1) appropriate patient selection for (2) an extended person-centred consultation, and (3) personalised goalsetting and follow-up. Key facilitators included improved therapeutic relationships, enhanced work satisfaction for care providers, and patient appreciation of extended time with their GP. Deliberate task division and collaboration between GPs and PNs based on patient, local setting, and care personnel is required. Challenges and facilitators for implementation encompassed a prioritisation tool to support GPs appropriately who to invite first for extended consultations, appropriate remuneration and time to conduct extended consultations, training in delivering person-centred chronic care available for all general practice care providers and an electronic medical record system accommodating comprehensive information registration. CONCLUSIONS: A person-centred chronic care approach targeting patients with multimorbidity in general practice was developed and piloted in co-creation with stakeholders. More consultation time facilitated better understanding of persons' situations, their functioning, priorities and dilemma's, and positively impacted work satisfaction of care providers. Challenges need to be tackled before widespread implementation. Future evaluation on the quadruple aims is recommended.

How does the external context affect an implementation processes? A qualitative study investigating the impact of macro-level variables on the implementation of goal-oriented primary care.

BACKGROUND: Although the importance of context in implementation science is not disputed, knowledge about the actual impact of external context variables on implementation processes remains rather fragmented. Current frameworks, models, and studies merely describe macro-level barriers and facilitators, without acknowledging their dynamic character and how they impact and steer implementation. Including organizational theories in implementation frameworks could be a way of tackling this problem. In this study, we therefore investigate how organizational theories can contribute to our understanding of the ways in which external context variables shape implementation processes. We use the implementation process of goal-oriented primary care in Belgium as a case. METHODS: A qualitative study using in-depth semi-structured interviews was conducted with actors from a variety of primary care organizations. Data was collected and analyzed with an iterative approach. We assessed the potential of four organizational theories to enrich our understanding of the impact of external context variables on implementation processes. The organizational theories assessed are as follows: institutional theory, resource dependency theory, network theory, and contingency theory. Data analysis was based on a combination of inductive and deductive thematic analysis techniques using NVivo 12. RESULTS: Institutional theory helps to understand mechanisms that steer and facilitate the implementation of goal-oriented care through regulatory and policy measures. For example, the Flemish government issued policy for facilitating more integrated, person-centered care by means of newly created institutions, incentives, expectations, and other regulatory factors. The three other organizational theories describe both counteracting or reinforcing mechanisms. The financial system hampers interprofessional collaboration, which is key for GOC. Networks between primary care providers and health and/or social care organizations on the one hand facilitate GOC, while on the other hand, technology to support interprofessional collaboration is lacking. Contingent variables such as the aging population and increasing workload and complexity within primary care create circumstances in which GOC is presented as a possible answer. CONCLUSIONS: Insights and propositions that derive from organizational theories can be utilized to expand our knowledge on how external context variables affect implementation processes. These insights can be combined with or integrated into existing implementation frameworks and models to increase their explanatory power.

Thinking and Enacting the Patient Medical Home Under Pandemic Conditions: A Qualitative Study From Primary Care in Alberta, Canada.

BACKGROUND: The COVID-19 (C19) pandemic shocked primary care systems around the world. Those systems responded by supporting patients in the community, and acute care facilities in crisis. In Canada, the Patient Medical Home (PMH) is a widely adopted care model that aims to operationalize the tenets and principles of Primary Health Care (PHC) as developed since the Alma-Ata Declaration. This paper describes how personnel working in and with Primary Care Networks (PCNs) in Alberta, Canada deployed the PMH model and its underlying PHC principles to frame and respond to the C19 shock. METHODS: Using purposive and snowball sampling techniques, we interviewed 57 participants who worked in public health and primary care, including community-based family physicians. We used interpretive description to analyze the interviews. RESULTS: PCN staff and physicians described how the PMH model was foundational to normal operations, and how C19 responses were framed by the patient-centric, team-delivered, and continuous care principles the model shares with PHC. Specifically, participants described ensuring access to care, addressing the social determinants of health, being patient centered, and redeploying and expanding PHC teams to accomplish these goals. DISCUSSION: Delivering PHC through the PMH allowed physicians and allied health staff to deliver patient-centered, team-based, holistic bio-medical services to Albertans. In tailoring services to meet the specific social and health needs of the populations served by each PCN, healthcare providers were able to ensure relevant support remained available and accessible.

Storylines of family medicine III: core principles-primary care, systems and family.

Storylines of Family Medicine is a 12-part series of thematically linked mini-essays with accompanying illustrations that explore the many dimensions of family medicine, as interpreted by individual family physicians and medical educators in the USA and elsewhere around the world. In 'III: core principles-primary care, systems, and family', authors address the following themes: 'Continuity of care-building therapeutic relationships over time', 'Comprehensiveness-combining breadth and depth of scope', 'Coordination of care-managing multiple realities', 'Access to care-intersectional, systemic, and personal', 'Systems theory-a core value in patient-centered care', 'Family-oriented practice-supporting patients' health and well-being', 'Family physician as family member' and 'Family in the exam room'. May readers develop new understandings from these essays.

Storylines of family medicine VI: ways of being-in the office with patients.

Storylines of Family Medicine is a 12-part series of thematically linked mini-essays with accompanying illustrations that explore the many dimensions of family medicine, as interpreted by individual family physicians and medical educators in the USA and elsewhere around the world. In 'VI: ways of being-in the office with patients', authors address the following themes: 'Patient-centred care-cultivating deep listening skills', 'Doctor as witness', 'Words matter', 'Understanding others-metaphor and its use in medicine', 'Communicating with patients-making good use of time', 'The patient-centred medical home-aspirations for the future', 'Routine, ceremony or drama?' and 'The life course'. May readers better appreciate the nuances of patient care through these essays.

Evaluating the Digital Health Experience for Patients in Primary Care: Mixed Methods Study.

BACKGROUND: The digital health divide for socioeconomic disadvantage describes a pattern in which patients considered socioeconomically disadvantaged, who are already marginalized through reduced access to face-to-face health care, are additionally hindered through less access to patient-initiated digital health. A comprehensive understanding of how patients with socioeconomic disadvantage access and experience digital health is essential for improving the digital health divide. Primary care patients, especially those with chronic disease, have experience of the stages of initial help seeking and self-management of their health, which renders them a key demographic for research on patient-initiated digital health access. OBJECTIVE: This study aims to provide comprehensive primary mixed methods data on the patient experience of barriers to digital health access, with a focus on the digital health divide. METHODS: We applied an exploratory mixed methods design to ensure that our survey was primarily shaped by the experiences of our interviewees. First, we qualitatively explored the experience of digital health for 19 patients with socioeconomic disadvantage and chronic disease and second, we quantitatively measured some of these findings by designing and administering a survey to 487 Australian general practice patients from 24 general practices. RESULTS: In our qualitative first phase, the key barriers found to accessing digital health included (1) strong patient preference for human-based health services; (2) low trust in digital health services; (3) high financial costs of necessary tools, maintenance, and repairs; (4) poor publicly available internet access options; (5) reduced capacity to engage due to increased life pressures; and (6) low self-efficacy and confidence in using digital health. In our quantitative second phase, 31% (151/487) of the survey participants were found to have never used a form of digital health, while 10.7% (52/487) were low- to medium-frequency users and 48.5% (236/487) were high-frequency users. High-frequency users were more likely to be interested in digital health and had higher self-efficacy. Low-frequency users were more likely to report difficulty affording the financial costs needed for digital access. CONCLUSIONS: While general digital interest, financial cost, and digital health literacy and empowerment are clear factors in digital health access in a broad primary care population, the digital health divide is also facilitated in part by a stepped series of complex and cumulative barriers. Genuinely improving digital health access for 1 cohort or even 1 person requires a series of multiple different interventions tailored to specific sequential barriers. Within primary care, patient-centered care that continues to recognize the complex individual needs of, and barriers facing, each patient should be part of addressing the digital health divide.

E2EE enhanced patient-centric blockchain-based system for EHR management.

To secure sensitive medical records in the healthcare clouds, this paper proposes an End-to-End Encryption (E2EE) to enhance a patient-centric blockchain-based system for electronic health record (EHR) management. The suggested system with a focus on the patient enables individuals to oversee their medical records within various involved parties by authorizing or withdrawing permission for access to their records. Utilizing the inter-planetary file system (IPFS) for record storage is chosen due to its decentralized nature and its ability to guarantee the unchangeability of records. Then an E2EE enhancement maintains the medical data integrity using dual level-Hybrid encryption: symmetric Advanced Encryption Standard (AES) and asymmetric Elliptic Curve Cryptography (ECC) cryptographic techniques. The proposed system is implemented using the Ethereum blockchain system for EHR data sharing and integration utilizing a web-based interface for the patient and all users to initiate the EHR sharing transactions over the IPFS cloud. The proposed system performance is evaluated in a working system prototype. For different file sizes between 512 KB to 100 MB, the performance metrics used to evaluate the proposed system were the time consumed for generating key, encryption, and decryption. The results demonstrate the proposed system's superiority over other cutting-edge systems and its practical ability to share secure health data in cloud environments.

Validating the Effectiveness of the Patient-Centered Cancer Care Framework by Assessing the Impact of Work System Factors on Patient-Centered Care and Quality of Care: Interview Study With Newly Diagnosed Cancer Patients.

BACKGROUND: Patients with cancer who have recently been diagnosed have distinct requirements compared to cancer survivors. It is crucial to take into account their unique needs to ensure that they make informed decisions and are receptive to the care provided. OBJECTIVE: This study suggested a framework titled Effectiveness of Patient-Centered Cancer Care that considers the needs of newly diagnosed patients with cancer and related work system factors. This study investigated how work system factors influence the perceptions of patient-centered care, quality of care, and associated outcomes among newly diagnosed patients with cancer. Patient-centered care is defined in terms of workload and communication considerations, whereas the quality of care is assessed through indicators such as trust in physicians, satisfaction with care, and perceptions of technology. METHODS: This study used qualitative data collected through interviews with newly diagnosed patients with cancer (N=20) right after their first visits with their physicians. Thematic analysis was conducted to validate the 5 hypotheses of the framework, mapping the interactions among quality of care, patient-centered care, and work system factors. RESULTS: We found that workload and patient-centered communication impact the quality of care and that the work system elements impact the patient-centeredness (workload and communication) and the quality of care (trust in physicians, satisfaction with care, and perception of technology use). CONCLUSIONS: Qualitatively validating the proposed Effectiveness of Patient-Centered Cancer Care framework, this study demonstrated its efficacy in elucidating the interplay of various factors. The framework holds promise for informing interventions geared toward enhancing patients' experiences during their initial visits after diagnosis. There is a pressing need for heightened attention to the organizational design, patient processes, and collaborative efforts among diverse stakeholders and providers to optimize the overall patient experience.

Improving Data Infrastructure for Person-Centered Outcomes Research on Intellectual and Developmental Disabilities.

Individuals with intellectual and developmental disabilities (IDD) continue to experience disparities in health and well-being despite improved provisions of person-centered care. Patient-centered outcomes research (PCOR) translates evidence into practice for meaningful outcomes. This piece describes findings from an environmental scan and stakeholder outreach to identify and prioritize opportunities to enhance IDD PCOR data infrastructure. These opportunities include developing a standardized research definition; advancing data standards for service systems; improving capture of IDD at point of care; developing standardized outcome measures; and encouraging Medicaid data use for IDD research. Within this piece, we discuss the implications of addressing data gaps for enhanced research. While the identified activities provide a path towards advancing IDD PCOR data infrastructure, collaborative efforts between government, researchers, and others are paramount.