Domain E: Public Trust & Transparency¶
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. |
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. |
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. |
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. |
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. |
E.3.2 Public Benefit & Value Demonstration¶
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. |
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. |