We hosted two consultation events in November on behalf of Connected Health Cities (CHC). The purpose of these sessions was to create opportunities for a small pilot group of residents from Northumberland to hear about the Great North Care Record (GNCR) project and to share their views and suggestions with the project team. The GNCR team wants to understand the circumstances in which people across Cumbria and the North East would be prepared to share their health data.
The first meeting took place in Berwick on Tuesday, 7 November and the second meeting was held in Ashington on Thursday 16 November 2017. A total of 35 residents were present at these sessions and individuals who were unable to attend in person sent in questions and comments. Similar workshops have been hosted by other local Healthwatch across the region.
What was the workshop about?
Each workshop began with a presentation from a member of the CHC team. Attendees were told that NHS healthcare professionals across the North East and North Cumbria region are teaming up to improve the way patient information is shared to improve health outcomes for patients.
The GNCR is a project whereby GP practices, hospitals, universities, community and mental health trusts have teamed up to improve the way patient information is shared to improve health outcomes for patients.
Historically, different NHS organisations have developed a range of individual systems to store patient records. This means important information held in one part of the health care system might not be readily available to other health care professionals. The team at GNCR believe a co-ordinated approach to sharing information through the development of a secure integrated system which shares key medical information will result in an improved patient experience.
The Connected Health Cities team wanted to:
- Ensure attendees understood what happens currently
- Understand attendee’s views on sharing their medical information
- Understand how attendees would like to control who sees their healthcare information
- Help attendees understand how access to healthcare data can help researchers
After the presentation, attendees were asked the following questions:
Would you allow different NHS organisations to access your information?
How would you feel about other agencies involved in healthcare having access, such as social care, the voluntary sector, and the police?
How do you feel about researchers accessing your data, by a data donor register for instance?
Everyone who attended these events made a positive contribution, raising questions and concerns but also offering ideas and solutions. A record of all contributions has been produced by Healthwatch Northumberland and Teesside University. This has been shared with the CHC team and will influence the future direction of the Great North Care Record.
We would like to extend our sincere thanks to everyone who gave up their time to share their views and opinions regarding this important development. The CHC team was extremely impressed by the knowledgeable and insightful discussions which took place at each workshop.
Workshops around the GNCR are still taking place across the region. Once these are complete, CHC will contact everyone who took part to issue thanks and keep those who would like to be, updated with the work as it proceeds and let people know how they can be involved in future developments. Teesside University will be analysing the responses and producing an independent report into their findings. This report will be publicly available in Spring 2018 and shared with all participants of the focus groups, with Healthwatch and on the Great North Care Record website. In addition, CHC is running a YouGov poll in the New Year to survey the views of 2000 patients to understand their views on information sharing.