Part of the argument, not an appendix.

Why this page exists

The MCDC programme works with people living with dementia. Consent, capacity, data governance, and safeguarding are not a legal appendix to the research — they are evidence of its rigour. The Ethics & Consent page should carry the same editorial weight as Research: a senior academic or REF panel assessor arriving here should close the page persuaded that the programme has thought through what it is doing with the people whose lives it touches.

The sections below are proposed. None of them have been drafted yet. Confirm or redirect each one, and I'll draft content per section.

Proposed section structure

1. Opening position (1 paragraph)

A short, direct statement of the programme's position on research involving people living with dementia. Not boilerplate. Sets the tone: why this page matters, why ethics is treated as research evidence, not compliance.

[PLACEHOLDER: confirm the framing you want — e.g. "every music session we observe is a clinical moment, and we've designed consent around that fact, not the other way round"]

2. Regulatory and institutional framework

• UCA ethics approval — committee, approval reference, approval period, scope
• Research Governance Framework (UK / Wales as relevant to pilot site)
• Mental Capacity Act 2005 (England and Wales) — how it's applied to MCDC
• Social Services and Well-being (Wales) Act 2014 — the "what matters to you?" principle and how it shapes consent conversations
• Care Inspectorate Wales and care-home regulatory interaction
• GDPR / UK DPA 2018 — lawful basis framing
• Relevant HCPC (Health and Care Professions Council) context for Tier 3 music therapists

3. Capacity and consent for people living with dementia

The central section. Needs to be the most carefully written on the site.

• Presumption of capacity and how it's assessed in practice at programme entry
• Informed consent — the specific consent we seek, in accessible language
• Ongoing / process consent — how consent is continuously confirmed session-by-session, not treated as a one-off signature. How signs of distress, withdrawal, or dissent are recognised and respected.
• Consultee (Section 32, MCA 2005) — when capacity is absent or fluctuating, how a personal or nominated consultee is involved, and what they are consulted on
• Right to withdraw — visible, low-friction, no justification required, and how that's communicated to participants and their families
• The surveillance question — the MCDC framework generates continuous observational data. This sub-section confronts that directly: how the data arises from a therapeutic activity the person has consented to for their own benefit; why this is not the same as surveillance; what the safeguards are

4. Data governance

• What data is collected — M-CST-ob session observations, Memory Tracks engagement data, ACT algorithmic outputs; no audio, video, or biometric data without a separate, specific consent episode
• Lawful basis — legitimate interests for routine care, explicit consent for research purposes; Article 9 special category provisions
• Data controller / processor chain — UCA as research controller; pilot-site care home as care-data controller; ACT as data processor
• Minimisation — only data necessary for the stated observational purpose
• Retention and deletion — named retention periods, deletion protocols on withdrawal
• Subject access rights — the person (or their legal representative) can access, correct, or request deletion of their MCDC data; how a request is made
• Cross-border considerations — where ACT infrastructure is hosted (AWS Amplify noted for anticipatory.care pilot), UK GDPR adequacy implications

5. Imagery, audio, and case studies

Separate consent considerations for anything that identifies the person beyond the observational data stream.

• Photography and video — per-image consent for web publication, renewable; default-no. Case-study-linked photos require active reconfirmation before publication.
• Audio — if session audio is recorded (e.g. singing), it is treated as identifiable data and requires explicit consent
• Anonymisation protocols — demographic framing rather than naming; composite vignettes clearly labelled as such (e.g. Mrs D in the white paper is a composite — this is already the convention and will be preserved)
• Family / carer imagery — separate consent from the person living with dementia; carers' own identifiability decided by carers, not inferred

6. Safeguarding

• The safeguarding lead at UCA and at the pilot site
• How distress during a session is identified, responded to, and escalated
• How a disclosure (of abuse, self-harm, or safeguarding concern) during a session is handled — including when session content triggers something unexpected
• Records of safeguarding concerns — how they're stored, who has access, how they're reviewed

7. Algorithmic transparency (ACT)

Short, specific section on the ACT algorithm's place in the ethics framework.

• ACT generates alerts and trends; it does not make clinical decisions
• Any ACT-generated alert must be traceable to the specific data points that triggered it (explainability)
• Training-data and threshold decisions, and how bias is examined
• Clinical validation — no ACT output is acted upon without clinical validation
• Route to challenge or disagree with an ACT output

8. Complaints, concerns, and withdrawal

• How to raise a concern (direct route, named person, response timeline)
• External escalation routes (UCA Research Integrity; Care Inspectorate Wales; ICO for data complaints)
• Withdrawal process — how a participant or their consultee formally withdraws, what happens to their data on withdrawal (retention vs deletion options), timescales

9. Contacts

• Named research lead
• Data protection officer (UCA or programme-specific)
• Safeguarding lead
• How to write to the programme (email, post)

10. Version and review

• Date of this statement
• Next scheduled review
• Change log (material changes disclosed; minor editorial changes not)

What I need from you before drafting

1. Confirm the structure above, or tell me which sections to combine, remove, or add.
2. Regulatory specifics — UCA ethics committee name and approval reference; DPO contact; safeguarding leads.
3. Pilot-site specifics — Pendine Park's own ethics arrangements, or whether they defer to UCA's.
4. Opening position — the first-paragraph framing. I can draft options if helpful.
5. How public you want the contacts section — full named contacts, or role-based email addresses only.

Once you confirm, I'll draft each section in turn and route them through the same status: draft → review → ready loop as the Research pages.