RESUMEN
OBJECTIVES: Electronic patient portals (ePortals) can facilitate greater healthcare democratization by providing patients and/or their authorized care partners with secure access to their medical records when and where needed. Such democratization can promote effective healthcare provider-patient partnerships, shared decision-making, and greater patient engagement in managing their health condition. This study examined the usefulness of providing individualized services and care in epilepsy (PiSCES), an epilepsy ePortal, as an enabler of more democratized epilepsy care. METHODS: Seventy-two individuals with epilepsy and 18 care partners were invited to report on their experience of interacting via PiSCES with clinical documents (epilepsy care summary record; epilepsy clinic letters) authored about them by healthcare providers. The OpenNotes reporting tool was adapted to capture participant experience. RESULTS: Twenty-five percent of invited patients and 44% of invited care partners reported on interacting with their epilepsy care summary; 14% of patients and 67% of care partners invited reported on their epilepsy clinic letters. Participant testimonials illustrate the value of PiSCES in: promoting autonomy, aiding memory, developing the knowledgeable patient, and enhancing healthcare partnerships. Ninety-six percent and 100% of respondents, respectively, reported understanding their epilepsy care summary and epilepsy clinic letter; 77% said the summary described their epilepsy history to date; 96% indicated that the letter provided an accurate description of their clinical encounter; 92% and 96%, respectively, valued access to their summary record and clinic letters; 77% of summary record and 73% clinic letter respondents reported learning something about their epilepsy or the healthcare service via PiSCES. Illustrating their potential patient and care partner safety role, 42% respondents identified inaccuracies in their clinical documents which were subsequently resolved by a clinician. SIGNIFICANCE: In the post-digital world highly customized on-demand products and services have come to be expected. Similarly, in epilepsy care, technologies such as PiSCES can enable more personalized, transparent, and engaging services.
Asunto(s)
Epilepsia , Portales del Paciente , Registros Electrónicos de Salud , Electrónica , Epilepsia/terapia , Personal de Salud , Humanos , Participación del PacienteRESUMEN
BACKGROUND: Coproduced epilepsy care sees people with epilepsy (PwE), their care-proxies, and healthcare providers (HCPs), working together as partners to build strong relationships, improve communication, trust, and share decision-making. Coproduction underpins good quality patient- and family-centered care (PFCC) that is responsive to individual patient needs, preferences, and values. By facilitating information sharing and exchange between partners, electronic patient portals (ePortal) can enable coproduction. This paper explores what HCPs, PwE, and their care-proxies value from their user experience of PiSCES, the Irish epilepsy ePortal. METHODS: A purposeful sample of actors involved in the receipt and delivery of epilepsy care and services were recruited via adult epilepsy centers at St James's and Beaumont Hospitals in Dublin. Interactive codesign sessions, surveys, and focus groups were used to elicit perspectives from PwE, care-proxies, and HCPs to understand their perception of how PiSCES could enhance or inhibit the epilepsy care process. RESULTS: Results illustrate that participants welcome the role PiSCES can play in: empowering PwE/care-proxies, strengthening confidence in the healthcare system; aiding memory; advancing health literacy, motivating PwE to understand their condition better; acting as a passport of care between different clinical settings; and creating a foundation for stronger coproduction partnerships. PiSCES was generally embraced; however, some HCPs expressed plausible concerns about how clinical implementation might impact their work practices. CONCLUSION: "Nothing about me without me" is a core value of the PiSCES initiative, recognizing that people need to be included in the planning of their own treatment and care. Our data show that PwE, their care-proxies, and HCPs value PiSCES potential, particularly in bolstering healthcare partnerships that foster inclusion, confidence, and trust.
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Epilepsia , Portales del Paciente , Adulto , Epilepsia/terapia , Grupos Focales , Personal de Salud , Humanos , Investigación CualitativaRESUMEN
OBJECTIVES: The current coronavirus disease 2019 (COVID-19) pandemic stresses an urgency to accelerate much-needed health service reform. Rapid and courageous changes being made to address the immediate impact of the pandemic are demonstrating that the means and technology to enable new models of health care exist. For example, innovations such as electronic patient portals (ePortal) can facilitate (a) radical reform of outpatient care; (b) cost containment in the economically constrained aftermath of the pandemic; (c) environmental sustainability by reduction of unnecessary journeys/transport. Herein, the development of Providing Individualised Services and Care in Epilepsy (PiSCES), an ePortal to the Irish National Epilepsy Electronic Patient Record, is demonstrated. This project, which pre-dates the COVID-19 crisis, aims to facilitate better patient- and family-centered epilepsy care. METHODS: A combination of ethnographic research, document analysis, and joint application design sessions was used to elicit PiSCES requirements. From these, a specification of desired modules of functionality was established and guided the software development. RESULTS: PiSCES functional features include "My Epilepsy Care Summary," "My Epilepsy Care Goals," "My Epilepsy Clinic Letters," "Help Us Measure Your Progress," "Prepare For Your Clinic Visit," "Information for Your Healthcare Provider." The system provides people with epilepsy access to, and engages them as co-authors of, their own medical record. It can promote improved patient-clinician partnerships and facilitate patient self-management. SIGNIFICANCE: In the aftermath of COVID-19, it is highly unlikely that the healthcare sector will return to a "business as usual" way of delivering services. The pandemic is expected to accelerate adoption of innovations like PiSCES. It is therefore a catalyst for change that will deliver care that is more responsive to individual patient needs and preferences.
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COVID-19 , Epilepsia , Portales del Paciente , Telemedicina/métodos , Humanos , SARS-CoV-2RESUMEN
This study's objective was to assess the usability of the epilepsy history module of the electronic patient record, developed at Beaumont Hospital, and to identify opportunities for improvement. Observation, interview and document analysis methods were used. Results indicated that the module was useable but the design did not work as well in practice as anticipated by theory. The next iteration of the module included identified enhancements; this iteration is currently in use.
Asunto(s)
Epilepsia , Sistemas de Registros Médicos Computarizados , Modelos Teóricos , Pautas de la Práctica en Medicina , Humanos , Entrevistas como Asunto , Irlanda , Observación , Estudios de Casos OrganizacionalesRESUMEN
PURPOSE: The American Academy of Neurology (AAN) quality indicators for epilepsy are designed to monitor quality, identify gaps, and ultimately drive improvements in clinical care. Appreciation of electronic patient records (EPR) to support such performance management is growing. This study aimed to demonstrate the use of an epilepsy-specific EPR in applying the AAN measures to objectively monitor clinical performance. METHOD: A sample of out-patient clinics at Beaumont Hospital, Dublin was benchmarked against 4 of the AAN quality indicators. RESULTS: 88% (142/160) of clinical encounters met the requirement to explicitly document seizure type and seizure frequency at each visit; aetiology or epilepsy syndrome was documented/updated for 58% (93/160); evidence of counselling about antiepileptic drug side effects was present in 34% (54/160) of records; counselling for women of childbearing potential was documented in 33% (18/57) of relevant records. CONCLUSION: The EPR makes performance monitoring efficient and objective. Results suggest either failure to carryout recommended clinical tasks or poor documentation. Whichever is the case, a baseline is provided against which improvement goals can be set.