Table · dataset · 2026
Supplementary information files for "A stakeholder‐informed approach to the development and implementation of national digital registry and learning healthcare system ( LHS ) for psychosis: findings from the EPICare platform"
Listed in HKU DataHub and figshare and Loughborough Research Repository and UP Research Data Repository — shown once because both records carry DOI 10.17028/rd.lboro.34014762.v1
Description
<p dir="ltr">Supplementary files for article "A stakeholder‐informed approach to the development and implementation of national digital registry and learning healthcare system ( LHS ) for psychosis: findings from the EPICare platform"<br><br><b>Introduction</b> Early Intervention in Psychosis services were established throughout England over two decades ago, yet despite aiming to optimise care, less than 40% of patients achieve full clinical recovery and notable inequities persist in accessing NICE‐recommended treatments.
Fragmented electronic health record systems and limited systematic data capture conceal how disparities in care delivery and effectiveness affect recovery and remission. The Early Psychosis Informatics into Care, EPICare, programme aims to develop a national, learning healthcare system incorporating a standardised core dataset and clinician dashboard to support equitable, data‐driven care.</p><p dir="ltr"><b>Methods</b> Our stakeholder co‐design approach comprised three interlinked work packages delivered between 2021 and 2022.
Read the rest (2 more)
Using participatory co‐design, we conducted four multi‐stakeholder workshops and preparatory lived experience sessions with people with lived experience, clinicians, informaticians, academics, and policymakers. We identified essential data elements using adapted “MoSCoW” card sort methodology, refined content, and developed dashboard requirements. Parallel informatics and implementation research assessed technical feasibility, data maturity, and harmonisation requirements and evaluated anticipated barriers and facilitators to future adoption.</p><p dir="ltr"><b>Results</b> Consensus was achieved on core EPICare dataset “must haves” including sociodemographic variables, routine treatment interventions, Patient‐ and Clinician‐Reported Outcome Measures, and longitudinal symptom data.
Stakeholders defined key dashboard features, prioritising usability and alignment with clinical workflow. Substantial variation in Trust‐level data infrastructure informed flexible technical architecture to mitigate implementation risk. Conclusion EPICare stakeholder engagement delivered the blueprint for a co‐designed, technically feasible and nationally scalable specification for a psychosis learning healthcare system, enabling progression to platform development and piloting across five Early Intervention in Psychosis services in the NHS.<br><br>© The Author(s), CC BY 4.0</p>
Links
Where it is published
- DOI doi.org/10.17028/rd.lboro.34014762.v1 ↗
DOI / persistent id · from datahub hku hk
Catalogue records · 1
- OAI-PMH record api.figshare.com/v2/oai?verb=GetRecord&metadataPrefix=oai_dc&identifier=oai%3Af… ↗
metadata API · from datahub hku hk
Topics
- From keywords
- Astronomy & Astrophysics · Chemistry · Chemistry · Clinical and health psychology · Clinical and health psychology · Clinical and health psychology · Clinical and health psychology · Clinical sciences · Clinical sciences · Clinical sciences · Clinical sciences · Computer Science & AI · Computer Science & AI · Computer Science & AI · Computer Science & AI · Earth & Environmental Science · Earth & Environmental Science · Earth & Environmental Science · Earth & Environmental Science · Economics & Finance · Economics & Finance · Engineering · Engineering · Engineering · Humanities · Humanities · Humanities · Life Sciences · Life Sciences · Life Sciences · Life Sciences · Materials Science · Mathematics & Statistics · Medicine & Health · Medicine & Health · Medicine & Health · Medicine & Health · Neurosciences · Neurosciences · Neurosciences · Neurosciences · Ocean & Atmospheric Science · Psychiatry · Psychiatry · Psychiatry · Psychiatry · Psychology & Behavioral Science · Psychology & Behavioral Science · Psychology & Behavioral Science · Psychology & Behavioral Science · Social Science · Social Science · Social Science
- Inferred from text
- Longitudinal study 65%
Provenance · 4 source records, 59 field assertions
| Source | Key | Last seen | Raw |
|---|---|---|---|
| HKU DataHub | oai:figshare.com:article/34014762 | 13 d ago | JSON v1 |
| figshare | oai:figshare.com:article/34014762 | 12 d ago | JSON v1 |
| Loughborough Research Repository | oai:figshare.com:article/34014762 | 12 d ago | JSON v1 |
| UP Research Data Repository | oai:figshare.com:article/34014762 | 11 d ago | JSON v1 |
| Field | Assertion | Extractor | Evidence |
|---|---|---|---|
| access_level | source · datahub hku hk | connector:datahub_hku_hk@1.0.0 | |
| concepts[field].anzsrc:field:320221 | mapping · figshare com | vocabulary-mapper@1.0.0 | keywords['Psychiatry'] |
| concepts[field].anzsrc:field:320221 | mapping · datahub hku hk | vocabulary-mapper@1.0.0 | keywords['Psychiatry'] |
| concepts[field].anzsrc:field:320221 | mapping · repository lboro ac uk | vocabulary-mapper@1.0.0 | keywords['Psychiatry'] |
| concepts[field].anzsrc:field:320221 | mapping · researchdata up ac za | vocabulary-mapper@1.0.0 | keywords['Psychiatry'] |
| concepts[field].anzsrc:group:3202 | mapping · repository lboro ac uk | vocabulary-mapper@1.0.0 | keywords['Clinical sciences'] |
| concepts[field].anzsrc:group:3202 | mapping · figshare com | vocabulary-mapper@1.0.0 | keywords['Clinical sciences'] |
| concepts[field].anzsrc:group:3202 | mapping · researchdata up ac za | vocabulary-mapper@1.0.0 | keywords['Clinical sciences'] |
| concepts[field].anzsrc:group:3202 | mapping · datahub hku hk | vocabulary-mapper@1.0.0 | keywords['Clinical sciences'] |
| concepts[field].anzsrc:group:3209 | mapping · datahub hku hk | vocabulary-mapper@1.0.0 | keywords['Neurosciences'] |
| concepts[field].anzsrc:group:3209 | mapping · researchdata up ac za | vocabulary-mapper@1.0.0 | keywords['Neurosciences'] |
| concepts[field].anzsrc:group:3209 | mapping · figshare com | vocabulary-mapper@1.0.0 | keywords['Neurosciences'] |
| concepts[field].anzsrc:group:3209 | mapping · repository lboro ac uk | vocabulary-mapper@1.0.0 | keywords['Neurosciences'] |
| concepts[field].anzsrc:group:5203 | mapping · datahub hku hk | vocabulary-mapper@1.0.0 | keywords['Clinical and health psychology'] |
| concepts[field].anzsrc:group:5203 | mapping · researchdata up ac za | vocabulary-mapper@1.0.0 | keywords['Clinical and health psychology'] |
| concepts[field].anzsrc:group:5203 | mapping · figshare com | vocabulary-mapper@1.0.0 | keywords['Clinical and health psychology'] |
| concepts[field].anzsrc:group:5203 | mapping · repository lboro ac uk | vocabulary-mapper@1.0.0 | keywords['Clinical and health psychology'] |
| concepts[field].local:field:astronomy | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:chemistry | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:chemistry | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:computer-science-ai | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:computer-science-ai | mapping · researchdata up ac za | connector:researchdata_up_ac_za@1.0.0 | |
| concepts[field].local:field:computer-science-ai | mapping · datahub hku hk | connector:datahub_hku_hk@1.0.0 | |
| concepts[field].local:field:computer-science-ai | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:earth-environmental | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:earth-environmental | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:earth-environmental | mapping · researchdata up ac za | connector:researchdata_up_ac_za@1.0.0 | |
| concepts[field].local:field:earth-environmental | mapping · datahub hku hk | connector:datahub_hku_hk@1.0.0 | |
| concepts[field].local:field:economics-finance | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:economics-finance | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:engineering | mapping · researchdata up ac za | connector:researchdata_up_ac_za@1.0.0 | |
| concepts[field].local:field:engineering | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:engineering | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:humanities | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:humanities | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:humanities | mapping · researchdata up ac za | connector:researchdata_up_ac_za@1.0.0 | |
| concepts[field].local:field:life-sciences | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:life-sciences | mapping · datahub hku hk | connector:datahub_hku_hk@1.0.0 | |
| concepts[field].local:field:life-sciences | mapping · researchdata up ac za | connector:researchdata_up_ac_za@1.0.0 | |
| concepts[field].local:field:life-sciences | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:materials-science | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:mathematics-statistics | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:medicine-health | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:medicine-health | mapping · researchdata up ac za | connector:researchdata_up_ac_za@1.0.0 | |
| concepts[field].local:field:medicine-health | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:medicine-health | mapping · datahub hku hk | connector:datahub_hku_hk@1.0.0 | |
| concepts[field].local:field:ocean-atmospheric | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:psychology-behavioral | mapping · datahub hku hk | connector:datahub_hku_hk@1.0.0 | |
| concepts[field].local:field:psychology-behavioral | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[field].local:field:psychology-behavioral | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:psychology-behavioral | mapping · researchdata up ac za | connector:researchdata_up_ac_za@1.0.0 | |
| concepts[field].local:field:social-science | mapping · researchdata up ac za | connector:researchdata_up_ac_za@1.0.0 | |
| concepts[field].local:field:social-science | mapping · repository lboro ac uk | connector:repository_lboro_ac_uk@1.0.0 | |
| concepts[field].local:field:social-science | mapping · figshare com | connector:figshare_com@1.0.0 | |
| concepts[method].local:method:longitudinal-study | enrichment · datahub hku hk | keyword-concept-rules@1.0.0 | title+description (65%) |
| description | source · datahub hku hk | connector:datahub_hku_hk@1.0.0 | /metadata/dc/description |
| license | source · datahub hku hk | connector:datahub_hku_hk@1.0.0 | /metadata/dc/rights |
| publication_date | source · datahub hku hk | connector:datahub_hku_hk@1.0.0 | |
| title | source · datahub hku hk | connector:datahub_hku_hk@1.0.0 | /metadata/dc/title |