Domain E: Public Trust & Transparency¶
Using the domain reference
Domain E includes the five maturity descriptors and the source-verified minimum evidence for L3–L5. Expand the evidence section beneath each indicator and retain an auditable assessment record. See How to Apply HDRL.
Focus: Engagement, transparency, and social licence
Indicators: 7 (6 Core, 1 Enhancement)
The business question
Will the public let us operate? Ensures we don't lose support through transparency gaps.
The care.data programme collapse in 2014 demonstrated that technical capability means nothing without public trust. Social licence for health data research is fragile and must be actively maintained through transparency, meaningful public involvement in governance, and clear demonstration of public benefit. This domain assesses whether an organisation has earned — and is sustaining — the right to operate.
Indicator Summary¶
| ID | Indicator | Type | Class | Unit |
|---|---|---|---|---|
| E.1.1 | Public Register of Data Uses | Core | B0 | Both |
| E.1.2 | Annual Transparency Reporting | Core | B0 | Both |
| E.2.1 | Lay Involvement in Governance | Core | B0 | Both |
| E.2.2 | Public Engagement Capacity | Enhancement | O | Both |
| E.3.1 | Opt-Out Management | Core | B0 | System |
| E.3.2 | Public Benefit & Value | Core | B0 | Both |
| E.3.3 | Legitimacy, Assurance & Learning | Core | B0 | Both |
E.1 — Transparency Mechanisms¶
E.1.1 Public Register of Data Uses¶
CORE · B0 · Both
| Level | Description |
|---|---|
| L1 | No register. Approved uses not disclosed. |
| L2 | Register developing. Content/format defined. Alliance standard reviewed. |
| L3 | Operational with basic info. Updates may be delayed. Partially aligned. |
| L4 | Comprehensive meeting Alliance standard. Updated within 30 days. Searchable, promoted. |
| L5 | Exemplary with outcomes. Public feedback. Aligned with HRA Make it Public. Good practice. |
Minimum evidence for L3–L5
Use this source-defined minimum evidence with the maturity descriptors above. Record the artefact, date, scope and the claim it supports.
L3 minimum evidence
- Operational register exists with basic fields and some delay tolerance
- Evidence approved uses are consistently entered (sample audit)
L4 minimum evidence
- Public data use register URL meeting required fields (Alliance standard mapping)
- Update log or evidence register is updated within 30 days (samples)
- Governance evidence linking approvals to register entries (audit trail)
L5 minimum evidence
- Register includes outcomes/benefits and is actively promoted (usage analytics)
- Mechanism for public feedback and evidence it is acted on
- Independent review/assurance of register completeness/quality (optional)
E.1.2 Annual Transparency Reporting¶
CORE · B0 · Both
| Level | Description |
|---|---|
| L1 | No annual reporting. No public accountability. |
| L2 | Report developing. Framework defined. |
| L3 | Basic report (projects, releases, users). Published. |
| L4 | Comprehensive: approvals, rejections, access times, satisfaction, outputs, incidents, plans. Within 3 months. |
| L5 | Best-practice with independent assurance. Co-developed with public. Influences improvement. |
Minimum evidence for L3–L5
Use this source-defined minimum evidence with the maturity descriptors above. Record the artefact, date, scope and the claim it supports.
L3 minimum evidence
- Published basic annual report (projects, releases, users) with date-stamp
- Evidence reporting process exists and is repeated annually
L4 minimum evidence
- Published annual transparency report within 3 months (date-stamped)
- Report includes required operational metrics (approvals/rejections, access times, incidents, plans)
- Evidence report informs improvement actions (tracked action log)
L5 minimum evidence
- Independent assurance statement or audit of the report
- Evidence of co-development with public/lay partners (process and outputs)
- Year-on-year trend reporting demonstrating learning and improvement
E.2 — Public & Patient Involvement¶
E.2.1 Lay Involvement in Governance¶
CORE · B0 · Both
| Level | Description |
|---|---|
| L1 | No lay involvement. Decisions without public input. |
| L2 | Approach defined. Recruitment initiated. NIHR standards reviewed. |
| L3 | Lay members appointed. Limited influence. Perspective sought but not embedded. |
| L4 | Meaningful: >= 25% lay DAC. Voting rights. Support, remuneration per NIHR. Demonstrably influences. |
| L5 | Exemplary in strategic and operational. Lay co-chairs. Diverse. Contributing to engagement. PEDRI aligned. |
Minimum evidence for L3–L5
Use this source-defined minimum evidence with the maturity descriptors above. Record the artefact, date, scope and the claim it supports.
L3 minimum evidence
- Lay members appointed to governance with defined roles
- Evidence lay input is sought and recorded (minutes/feedback)
L4 minimum evidence
- Lay membership evidence (>=25% where claimed) with role descriptions and voting rights
- Support/remuneration evidence consistent with NIHR standards
- Minutes/examples showing lay input influenced decisions
L5 minimum evidence
- Lay co-governance evidence (co-chairs/strategic roles) and diversity monitoring
- Evaluation evidence of PPIE effectiveness and improvements made
- Contribution to wider PPIE practice (shared methods, networks)
E.2.2 Public Engagement Capacity¶
ENHANCEMENT · O · Both
| Level | Description |
|---|---|
| L1 | No dedicated capacity. Reactive, ad-hoc. |
| L2 | Strategy developing. Responsibility assigned. Activities planned. |
| L3 | Some activities. Not systematic or evaluated. |
| L4 | Dedicated function with budget/staff. Diverse audiences. Evaluated. Two-way dialogue. |
| L5 | Comprehensive with multiple channels. Co-designed. Social media. Proactive. Capacity shared. |
Minimum evidence for L3–L5
Use this source-defined minimum evidence with the maturity descriptors above. Record the artefact, date, scope and the claim it supports.
L3 minimum evidence
- Some engagement activity delivered (log) but not yet systematic
- Evidence learning captured (feedback) even if evaluation limited
L4 minimum evidence
- Dedicated function evidence (staff/budget) and engagement plan
- Activity log covering diverse audiences + evaluation results
- Evidence outputs feed back into governance decisions (issues/actions)
L5 minimum evidence
- Co-designed engagement programme evidence (materials, partners, governance)
- Multi-channel sustained delivery with measured reach/impact
- Evidence of sharing capacity or supporting others (toolkits, training)
E.3 — Trust & Social Licence¶
E.3.1 Opt-Out Management¶
CORE · B0 · System
| Level | Description |
|---|---|
| L1 | No mechanism or not operational. Choices not respected. |
| L2 | Mechanism exists but incomplete. Some opted-out data may be included. |
| L3 | Operational. Opted-out excluded. Audit. Rate monitored. |
| L4 | Robust mechanism with routine auditing. Opt-outs applied consistently across all relevant data flows. Clear public information available and maintained. |
| L5 | Mature preferences management (granular where policy permits). Auditable, timely updates and proactive communications; opt-out rates reported contextually. |
Minimum evidence for L3–L5
Use this source-defined minimum evidence with the maturity descriptors above. Record the artefact, date, scope and the claim it supports.
L3 minimum evidence
- Operational opt-out mechanism with audit evidence
- Monitoring of opt-out rates and documented handling of exclusions
L4 minimum evidence
- Policy and technical design showing opt-outs applied across all relevant data flows
- Audit evidence (sampling/results) demonstrating correct application
- Public-facing information (webpages/materials) kept current
L5 minimum evidence
- Evidence of preference management maturity (granular options where policy permits)
- Audit evidence of timely updates and sustained compliance over time
- Contextual reporting of opt-out rates with interpretation (not used as readiness proxy)
E.3.2 Public Benefit & Value¶
CORE · B0 · Both
| Level | Description |
|---|---|
| L1 | No articulation. Benefits without visibility. No framework. |
| L2 | Framework developing using NDG. Commitment expressed. Initial mechanisms. |
| L3 | Benefit articulated using NDG. Examples. Commercial income partially reinvested. Statement required. |
| L4 | Clear proposition. NDG methodology applied consistently. Revenue supports public. Principles published. |
| L5 | Comprehensive with measurable return. Methodology contributes to sector. Community agreements. Public involved. |
Minimum evidence for L3–L5
Use this source-defined minimum evidence with the maturity descriptors above. Record the artefact, date, scope and the claim it supports.
L3 minimum evidence
- Public benefit statements required and examples available
- Evidence NDG-aligned framework is used at least for priority decisions
L4 minimum evidence
- Published public benefit framework aligned to NDG (or equivalent) and applied in decisions
- Evidence of consistent benefit statements in DAC approvals
- Evidence of reinvestment/use of revenues to support public benefit (where applicable)
L5 minimum evidence
- Measurable return evidence (benefits tracked with metrics and attribution approach)
- Public involvement evidence in benefit definition/assessment
- Evidence of sharing/standardising benefit methodology beyond the organisation
E.3.3 Legitimacy, Assurance & Learning¶
CORE · B0 · Both
| Level | Description |
|---|---|
| L1 | No meaningful assurance or learning. Issues repeat; accountability weak. |
| L2 | Assurance/learning plan exists. Complaints/appeals defined but not embedded. |
| L3 | Periodic internal assurance. Learning after incidents; limited visibility. |
| L4 | Regular independent review. Systematic learning with published actions. |
| L5 | Trusted model. Routine independent assurance; confidence measures tracked; good practice shared. |
Minimum evidence for L3–L5
Use this source-defined minimum evidence with the maturity descriptors above. Record the artefact, date, scope and the claim it supports.
L3 minimum evidence
- Periodic internal assurance activity and incident learning documented
- Evidence actions are tracked even if not fully public (action log)
L4 minimum evidence
- Independent review/assurance report covering governance and transparency
- Complaint/incident learning process evidence + published action log
- Evidence of public feedback mechanisms and responses
L5 minimum evidence
- Routine independent assurance over time with comparative benchmarking
- Public confidence/legitimacy measures tracked (survey/metrics) with trend
- Evidence of sharing assurance/learning approach with other nodes