"Health Records, Citizens and Genes"

Activity: Participating in or organising an event typesPublic Engagement – Public lecture/debate/seminar


Health Records, Citizens and Genes - Patients' Views and Practices on the Processing of Health Data.

"This event brought together national and local healthcare experts, leaders and patients in a friendly and informal environment to learn, share, debate support and encourage one another in making best use of our data. The event was aimed at Patients, GPs, Data Protection Officers and the Health and Care professionals who're keen to try and improve the use of Health and Care data across Greater Manchester and their own communities. The aims of the event were:
1. Improve pubic understanding of the benefits and potential opportunities arising from accessing and sharing their health and care records and information
2. See how patients and practices can overcome any potential risks associated with sharing their health and care data."

The event included speakers from UK Biobank, NHS Digital, the University of Edinburgh (Dr Claudia Pagliari) as well as patients, patient advocates, software developers, NHS Information Governance specialists, and two primary care doctors with extensive experience of giving patients access their health records.

Invited speaker Dr Claudia Pagliari is an expert in citizen-centred digital health. She described some of the key messages arising from research examining patient access to electronic health records (e.g. via Personal Health Records and Patient Portal), and the challenges governments face when deciding to invest in innovations that may offer value for patients' information rights, satisfaction and self care, but for which relatively little concrete evidence of health benefits or cost savings exists. She discussed the importance of taking users into account when assessing the value of digital health; for example those with long term conditions may derive considerable benefit, while others may simply be happy to know they can access their records should they wish to. She also reflected on the length of time it has taken for patient record access to become a normality in the NHS when some doctors, such as the ones organising this event, have been doing it for decades. She pointed out that moving towards greater information sharing with data subjects is now expected in all sectors and healthcare will inevitably follow. Finally she talked about some of the new ways in which patients are generating, holding and sharing their data, how these might be brought together with their NHS records in the future, and some of the ethical and privacy challenges this may present.
Period12 Jul 2019
Event typeConference
LocationGlossop, United KingdomShow on map
Degree of RecognitionNational


  • Health Records
  • Health Data
  • Data rights
  • data sharing
  • Data Ethics
  • Information Governance
  • information security
  • Public engagement
  • Patient data
  • Patient engagement
  • cyber security
  • evidence-based policy
  • General practice
  • Personal Health Records
  • Innovation