The Chair of the care.data Advisory Group, Ciarán Devane, invites you to participate in their third public discussion about the work they are developing to inform and assure the programme known as ‘care.data’.
Phil Booth from medConfidential will be attending, and the session will examine some of the proposed responses from NHS England to issues raised by staff, patients and members of the public.
An expert panel give their views on data and its use, followed by discussion.
Chair
Speakers
It’s been over 6 months since NHS England pressed “pause” on care.data, following public and professional outcry. What has changed? How have the scheme and bodies involved addressed the concerns of GPs, patients and providers. And is it enough?
This event, co-hosted by the Oxford Health Experiences Institute and Healthwatch Oxfordshire, aims to explore the issues associated with sharing health information and the care.data programme.
The debate is being chaired by Dame Fiona Caldicott from Oxford University Hospitals Trust. The panel comprises John Appleby, Chief Economist from the Kings Fund, Phil Booth from medConfidential and John Carvel, the health and social care journalist.
The care.data programme in the NHS came off the rails, despite – or possibly because – officials tried presenting it as an ‘open data’ initiative. It isn’t. But this conflation of ‘data sharing’ with open data is far from unique; from the National Pupil Database to your tax records and Cabinet Office’s resurrection of plans for mass sharing of citizen data that last surfaced in an obscure clause in the 2009 Coroners and Justice Bill, the government has designs on your data.
The public meeting will be held at 19:00 at the
Council Chamber, St Albans District Council
Civic Close, St. Peter’s Street, St. Albans AL1 3JE [map]
Many thanks to Richard Tutton, Mairi Levitt and Garrath Williams at the Department of Sociology and Centre for Science Studies for organising the event, and to Maggie Mort for chairing such a lively public discussion.
VENUE: Banquesting Room, Lancaster Town Hall, Lancaster, Lancashire LA1 1PJ [Map]
DATE & TIME: Monday, April 28, 2014 from 6:15 PM to 8:45 PM
SPEAKERS: Dr David Wrigley, GP based in Carnforth; Phil Booth, medConfidential, Dr Garrath Williams, Senior Lecturer, Lancaster University, others tbc.
The event is free to attend but the organisers ask you to please register at:
https://www.eventbrite.com/e/care-about-sharing-your-medical-records-tickets-11073722803 (tickets closed)
Many thanks to Richard Horton and Allyson Pollock for organising the conference, and to everyone who made such useful contributions on the day.
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Programme for care.data meeting – Saturday 5th April 2014 |
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| Time | Action |
| 9.30am | Coffee |
| 10.00am | What are the governance concerns : brief review of HSCIC, CAG and GP data controllers and CSUs – Phil Booth, medConfidential (slides); Ron Singer, GP & MPU |
| 10.10am | Concerns about what is happening to public health data: cuts to ONS data collection – Prof Alison McFarlane |
| 10.20am | The Faculty of Public Health’s position – Dr John Middleton |
| 10.30am | How robust are the current legal protections: DPA and exceptions to patient confidentiality – Peter Roderick |
| 10.40am | The Scottish position regarding data sharing – Dr Janet Murray (ISD Scotland) |
| 10.50am Discussion and contributions from the floor | |
| 11.20am | The government’s proposed amendment – Lord David Owen |
| 11.30am | Proposals for new legislation – Peter Roderick |
| 11.40 – 12.45pm | Proposal for Action: discussion led by Lord David Owen and Peter Roderick LUNCH PROVIDED |
Hosted by ORG London – meetup page
SPEAKER: Phil Booth, coordinator of medConfidential and former National Coordinator of NO2ID will be giving month’s talk on care.data.
Significant changes to how your medical data is handled are happening now. Medical data that was previously under the control of your GP is going to be uploaded to a central database at the Health and Social Care Information Centre, from where it will be shared with companies and organisations inside and outside the NHS for a range of purposes, none of which are to with your direct medical care.
Phil will be explaining more about what’s happening and how you can opt out of the changes. Talk starts at 7.30pm
Hosted by ORG Brighton – Meetup page
TA3M are monthly meetups that happen simultaneously in cities throughout the world. It brings together a diversity of people interested in surveillance, censorship and open technology.
Format: Short talks followed by discussion, drinks and networking
Phil Booth, medConfidential – Threats to your medical confidentiality: care.data
Significant changes to how your medical data is handled are happening now. Medical data that was previously under the control of your GP is going to be uploaded to a central database at the Health and Social Care Information Centre, from where it will be shared with companies and organisations inside and outside the NHS for a range of purposes none of which are to with your direct medical care.
Double Blink, theatre against surveillence