What does care.data mean for your helpline?

Nicola James

The NHS has been collecting useful information about care and treatment provided in hospitals for some time, but hasn’t been collecting enough information about the care provided in places such as care homes, community services and GP practices. This means no-one really knows how well all the different parts of the NHS are working together.

That’s why the NHS will begin to collect more information about the care provided in GP practices. Then, by connecting this with the information from hospitals, it will be possible to see what is working really well in the NHS – and what could be done better. This programme of work is known as care.data and the long term aim is to increase the range of information that is collected across all NHS-funded services for purposes beyond the direct care of patients.

Find out what this means for your helpline and book your place on one of our free seminars.

  • The NHS will begin to collect more information about the care provided in GP practices
  • Patients who don’t want their identifiable GP information to be used for purposes beyond their direct care can opt out.
  • NHS England is planning a programme of communications to explain these changes and is working with Helplines Partnership to engage with the non-profit sector

Phased roll out

NHS England has confirmed that there will be a phased roll out for the care.data programme. In this way, the best ways of supporting GPs to ensure patients are informed of the purposes of this data sharing, its safeguards and how they can opt out, can be refined and tested with complete transparency. The care.data programme confirmed (in October) the CCGs that are taking part in the pathfinder stage as: Leeds North, Leeds West plus Leeds South and East, Somerset, West Hampshire and Blackburn with Darwen.

Pathfinder practices in Blackburn with Darwen CCG are planning to begin communicating with their patients from late June 2015 with communications in the other pathfinder areas expected to commence from September. A full evaluation of the pathfinder stage will take place and further rollout of the programme is dependent on this evaluation.

Patients whose GP practices are taking part in the pathfinder stage of the programme will receive a letter, information booklet and an opt-out form. If patients wish to opt out they will be required to complete and return the form to their GP practice for which a prepaid envelope is also provided.

What are the benefits?

The NHS collects information because it leads to improvements in the treatment and care of patients. By gathering information about care provided across the nation, we expect it will have a range of benefits, for example, in understanding which groups are most at risk of developing certain diseases and conditions and giving everyone access to high quality care, whoever they are, wherever they live.

In short, it will help the NHS provide better services, carry out research and find more effective ways to prevent, treat and manage illness.

What does this mean for our helpline?

Many helplines offer anonymous and confidential services for callers; and callers in turn trust helplines and will speak to them about problems that they may not want to access other services to discuss. Helplines Partnership is really pleased to be working with NHS England to provide two briefing sessions on the care.data programme. These sessions will enable helplines that may have contact with callers who have questions or worries about how their data may be used or shared to find out more about the programme and know where to signpost callers to for further information. This in turn will help vulnerable callers to make an informed choice about how they would like their health information to be used.

The briefing sessions are particularly aimed at helplines working in health and social care fields or helplines that may have callers in one or more of the pathfinder areas. However this project is open to all helplines with an interest.

Details about the free seminar will follow shortly.

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