The Group held their first meeting on Tuesday 18th March at the Yemeni centre, Tildasley Street, West Bromwich.
Opening the meeting our Chair, Mr Bill Hodgetts, explained that the purpose of the meeting was that it would be open and free, an opportunity for you to have your say and that we should all show respect for each other.
Bill then wecomed our guest speaker, Dr Damian Williams. Damian is a GP at Hall Green Health, as well as the Clinical Lead for Birmingham CrossCity CCG. Additionally Damian is a Digital Clinical Champion with NHS England.
The topic to be discussed was care.data a new project launched by the NHS to ensure that the best possible evidence is available to improve the quality of care for all.
The new system will provide joined-up information about the care received from all of the different parts of the health service, including hospitals and GP practices.
Your date of birth, full postcode, NHS Number and gender rather than your name will be used to link your records in a secure system, managed by the HSCIC. Once this information has been linked, a new record will be created. This new record will not contain information that identifies you. The type of information shared, and how it is shared, is controlled by law and strict confidentiality rules.
Sharing information about the care you have received helps us to understand the health needs of everyone and the quality of the treatment and care provided and reduce inequalities in the care provided. The new system will also provide information that will enable the public to hold the NHS to account and ensure that any unacceptable standards of care are identified as quickly as possible. Information will help to:
find more effective ways of preventing, treating and managing illnesses
make sure that any changes or improvements to services reflect the needs of the local patients
understand who is most at risk of particular diseases and conditions, so those who can plan care can provide preventative services
improve your understanding of the outcomes of care, giving you greater confidence in health and social care services
identify who could be at risk of a condition or would benefit from a particular treatment
make sure that the NHS organisations receive the correct payments for the services they provide
improve the public’s understanding of the outcomes of care, giving them confidence in health and care services
guide decisions about how to manage NHS resources so that they can best support the treatment and management of illness for all patients
However many people said that:
They had not received any information through the post
The information was delivered with the junk mail
Would the information be shared by insurance companies?
Would it be possible to be identified with the information collected?
You have to choose to opt out and not opt in.
Everyone agreed that the way in which the information was delivered (or not as is the case) was poor. It should have been sent to you personally. There had been no information advertising this, i.e. on the TV, radio or local press. Damian reported that the NHS have agreed to delay the collecting of this information for 6 months in order to be able to have this explained to people better. But you can still decide to opt out by visiting your local GP and telling them of your wishes (although there were concerns on the additional burden this would put on GP practices).
The type of data being shared would be strictly controlled, for example you name and address and other personal data would not be shared. The free text your GP puts onto his computer would not be shared. The below leaflet Better Information means better care issued by the Health and Social Care Information Centre explains more.