Cohorts Advisory Board
Cohorts is our patient registry platform for rare disease charities and research organisations. It supports patient profiles, clinical trial recruitment and patient-facing tools such as Health Passports, so its design and operation involve clinical, research, patient-engagement, technology, information-security and health-data considerations.
The Cohorts Advisory Board is a multidisciplinary advisory body, independent of the day-to-day management of Cohorts. It gives expert advice, constructive challenge and recommendations to Lluminate leadership on how the platform is developed and run.
Members
César García Torres
Parent and civil engineer
Chair · Lived experience
Dr Faye Bolan
Consultant (Specialist in Rare Diseases), Costello Medical
Research and scientific
Keith Cottenden
Owner and Principal Consultant, Vale Cyber Security
Cybersecurity and information security
Dr Daniel Lumsden
Consultant Paediatric Neurologist, Evelina London Children's Hospital
Clinical
Catherine Sim
Chief Operating Officer, Reverse Rett
Patient advocacy and community
Rachael Stevenson
Trustee and Strategic Advisor, Reverse Rett
Evidence ecosystems and partnerships
In attendance
Caroline Doyle
Secretary, Lluminate
Lluis Mather
CEO and Technical Lead, Data Protection Officer, Lluminate
Purpose and objectives
The board advises on Cohorts at a platform level, and it brings clinical, research, cybersecurity and information-security, evidence ecosystem and partnership, patient-advocacy and lived-experience perspectives to its work. Its recommendations apply to the product as a whole rather than to any single registry hosted on it.
The board
- Strengthens the quality and robustness of Cohorts through multidisciplinary external expertise and challenge.
- Identifies and advises on relevant risks, gaps, opportunities and emerging developments.
- Provides or facilitates specialist review of significant matters within members' areas of expertise.
- Supports trust and confidence among patient organisations, researchers, clinicians, pharmaceutical organisations and other partners.
Scope of advice
Clinical
Clinical relevance, appropriateness of data and concepts, usefulness to clinicians and implications of proposed features.
Research and scientific
Research utility, data quality, study design, research readiness and emerging opportunities.
Cybersecurity and information security
Security controls, cyber risk, resilience and relevant assurance frameworks.
Evidence ecosystems and partnerships
Evidence generation, organisational capability, research and regulatory needs, data use, partnerships and links across the wider health and research ecosystem.
Patient advocacy and community
Patient-organisation priorities, community trust, engagement, communication and sector relationships.
Lived experience
Patient and caregiver experience, accessibility, burden, usability, relevance and expectations.