West Hampshire care.data Programme

Engagement Event for the VCS and Community Partners

Wednesday 26th August 2015

Discussion Notes

ENGAGEMENT & COMMUNICATION

  1. Information missing from the letter
  • It was explained that there is no date by which the public need to respond – this is because the option to opt out remains open indefinitely and you may opt out at any time.
  • The letter does not mention that this is a pilot scheme.

People may be interested in the outcomes of the pilot, where can they access this information?

  • There is no information about the times phone lines are open.

Operators are currently being trained, and when rung, it was found that the phone line is operational. Questions were asked about whether there would be capacity to deal with high numbers of calls during the launch of the scheme. It will be part of the pathfinder programme to discover how many people call. It was also reported by Healthwatch that the email address works, and NHS 111 have also been informed of care.data.

  1. How will people be informed of public engagement events? These were not in the letter.

It was confirmed that there will be a big effort to ensure people are already prepared when their letter arrive.This will be done through:

  • Publicity campaignthrough social and local media
  • It is hoped that this campaign will encourage people to open the letter and read it, drawing attention to the fact there is a decision to be made. Patient groups have previously warned against putting “An important message from your GP” on the envelope as this may cause stress.
  • It was asked whether the CCG had a media strategy to cope with this campaign; if the wrong information goes out, it can be very difficult to recover.
  • The CCG are talking with BBC South Today’s Health correspondent to inform them of the upcoming scheme and hope all sides of the story will be covered.
  • Employers: articles in newsletter and office circulars
  • Parish councils: articles in local parish newsletters
  • Organisations: advisory groups such as CAB and other support groups
  • People who give advice (eg GP surgery receptionists) will get a specific guide. CAB offered to help work on this guide, and create a specific one for their advisors.
  • Hospitals (though not directly involved) will also be informed about this, so that they can respond if asked questions by patients.
  • There will also be an example letter available electronically
  1. Should the information be available in other formats?

It will be available electronically, in easy read, braille, BSL videotape and large format. It will also be available in other languages; West Hampshire CCG has identified the most common languages needed in addition to English are Polish and Nepalese. There were no further suggestions for other formats.

  1. A key aim for the Pathfinder area is that people are able to make an informed choice about care.data. How can the VCS sector help, particularly in the case of voices seldom heard?
  • The sector already has their own established networks for communication, and uses appropriate communication methods for different client groups. However, there is space for a dialogue;
  • how should the sector report back any difficulties or comments? Feedback may help iron out creases for the national rollout. Publicising this to VCS organisations may be useful.It was suggested this should be done through Healthwatch or by reporting to the CCG.
  • How will the VCS sector know the results of the pilot?

This will be communicated by the national evaluation form NHS England.

  • To help people not part of organisations, Basingstoke The Dome was suggested, as was publicity through the CVS Network. Hampshire County Council (HCC) also have a list of contacts for contract providers.
  • Other networks were also discussed. Faith centres have been contacted, but the Interfaith Network was also suggested.
  • Every point of contact. Age UK ran a pilot involving pharmacists and Post Offices, making sure that people were aware of dementia issues. It was suggested that these contacts were also made aware of care.data as they were likely to have discussions with people confused about the scheme, who may be unaware of whom else they could ask. It was also suggested that Dementia Advisors with Alzheimer’s Society be made aware of the scheme.
  • Domiciliary care HCC also have a panel of providers. the contact for this is Carol Ashton.
  • Care Networks The local carers networks are Carers Together and the Princess Royal Trust for Carers.

ABOUT CARE.DATA

  1. Under the pilot, young people aged 15¾ will be sent a letter. What will be the system to ensure young people reaching this age are informed?
  • This is a longer term issue, which may have to be parked as it is much bigger than just care.data.
  • It was suggested by Dr. Tim Cotton that decisions about opting out of care.data could be communicated in a similar way to the new systems for electronically booking appointments and repeat prescription online, which are only available to people over the age of 18.
  • The issue of consent for young people was also highlighted- what if children decide to opt out when they reach the appropriate age? Will all previously collected data be deleted, or just stop being collected from that point?
  • It was also confirmed that it is the responsibility of the national programme, not the GP surgery or CCG, to distribute letters.
  1. What about people who are not registered with a GP?

It is possible that where someone is treated at hospital and there are no corresponding details for them with GP practises, the fact that they are not registered with a GP could be picked up. However, this data may already be available.

  1. There may be some frustration from the public that they have been asked to take part in the pilot to share their data and that clinical records are not joined up. Perhaps an explanation about direct- and indirect patient data is needed, as well as the whole population benefits.