National Care Service - information sharing to improve care support: regional forums - findings summary

What we learned

We have gathered valuable feedback from the sessions.

Some of the most common issues that were raised across the sessions include:

• keeping people’s information safe and secure
• giving people a say in who their information is shared with
• how sharing my information could improve people’s experience of accessing social care support

In-person sessions

These are some headline themes which have emerged from the in-person co-design sessions. They are based on feedback on the ‘about me’ information, which people will be able to add and manage within their own Care Record.

‘About me’ information aims to include information about someone’s life, what is important to them, and will provide context for the planning of their support and care.

This will not include the information which is already shared between health professionals.

People want to be informed about information sharing

We heard that:

• people want to understand what is shared about them and with who
• there is a lack of confidence and understanding around GDPR and rights amongst general public in relation to viewing data and records

We need to build trust around information sharing

We heard that:

• building trust around information use is key to information sharing
• there are concerns about who has access to personal information and the consent around information sharing
• the experience of digital exclusion or lower levels of digital capability can affect people’s attitudes towards information sharing
• some are open to sharing their information without barriers if they trust that it can bring benefits

The use of the Care Record needs to be person-centred

We heard that:

• people want to be respected and supported to make their own decisions about care
• people want to be able to manage how information is shared
  • people feel they should be able to decide who they don't want to share ‘About me’ information with
  • people want the ability to update how their information is shared
• people want to be able to manage what information is shared
• people want the ability to update what information is shared
• people want greater clarity around their rights to sharing information
• some people want to be able to create a Care Record prior to any social care support being needed, to allow for future planning
• personal decisions about what information to share and who the information is shared with depend on circumstances and can change
• deciding on who from someone's support network should have access to their information is complex and unique to the individual
• sometimes personal information can be deliberately left out of a record by choice – for example, distressing information that can potentially retraumatise the supported person

Information sharing practices need to keep people safe

We heard that:

• there should be clarity around the types of information people can input into their Care Record and how this will be used so that it doesn’t hold unnecessary information
• sometimes information needs to be shared with people or services for safeguarding reasons
• there needs to be a process for an emergency use of information to ensure that someone is safe
• there needs to be a process for handling the sensitive information held on a Care Record
• support is sometimes needed to help the supported person share their information

The Care Record and information sharing can make a difference to people’s support and care experience

We heard that:

• the Care Record can relieve the emotional burden of information sharing, such as the negative effects of having to repeat your story
• the Care Record can be used as a tool to enable person-centred support
• the Care Record can help care and support to focus on outcomes
• the Care Record can help make people's experiences more joined up across different services
• flexibility of care delivery and faster responses to change are needed to deliver the care people need. This includes quick changes to information
• access to information about services can help or cause barriers to care and support

The workforce needs to be supported to share information more effectively

We heard that:

• information being shared properly and securely by health and social care support staff is key, and the responsibility for information sharing should not lie solely with the supported person
• understanding and implementing effective GDPR practices by the workforce is key for effective information sharing and are sometimes perceived as a barrier
• access to training around how staff should capture and share information is a challenge
• there are concerns about how organisations are sharing information differently
• the existing information sharing and decision-making culture between and within services should be improved
• concerns around staff not using the information they have access to, to make care and support person-centred
• social care support staff feel undervalued and workforce fear increasing information sharing means taking on additional work
• workforce hierarchy affects frontline staff’s access to information and the perceived credibility associated with what they share with other professionals
• effective information sharing is also vital in keeping staff safe, for example flagging if a supported person should be visited with at least two members of staff
• information sharing should be supported beyond community health and social care support services for example, in schools, prison services, police

How the Care Record will fit into existing information sharing practices

We heard about the importance of:

• co-ordinating with existing initiatives for information sharing (including single shared assessment, anticipatory care plans, health passport, red bag)
• recognising that personal relationships remain vital in sharing and understanding information between the supported person and professionals

Testing the Care Record

From testing an example of how the Care Record could look in the in-person sessions, we also gained a better understanding:

• of the top four information priorities for people:
  • ‘how I communicate and how to communicate with me’
  • ‘what is most important to me’
  • ‘people who are important to me’
  • ‘how and when to support’
• that there are differences in priority for how professionals and supported people want information to be ordered in their view of the Care Record
• people want their care record to capture positive and broad information about themselves – for example, ‘my wellness’ and ‘my hopes, goals, aspirations’, and not just the things that they cannot do and need support with
• recording more information about people within a Care Record that the things they need support with and why could help support independent living and be a way for people to self-advocate for their choices

Online session

The following points were gathered in the online information sharing session.

The Care Record

We heard that:

• there should be more focus on the integration of health and social care support in how the National Care Service (NCS) and the Care Record are being presented, as currently people feel it is too health-focused
• there is fear around the use of the word 'care' in isolation without the context of 'social care and support'. This is because 'care' has associated health connotations when not all people in receipt of social care support require a health intervention.
• some people recommended that there is a focus on the social model of disability in the presentation of the Care Record as opposed to a medical model

Awareness

We heard that:

• the purpose of the Care Record (for the workforce and for people accessing social care support) should be clear for everyone
• messaging around the Care Record will be key in helping people understand that their Care Record will include not only health and social care support information but things that support them to live and important things they would like people who support them to be aware of– for example hobbies, aspirations, goals and communication needs

Trust

We heard that:

• there is a lack of trust of the current social care support service landscape and having meaningful choice around how information is shared about theme would help people build trust around the services they use
• having control over their personal information is seen as important for establishing a good balance of power between people who access and people who deliver social care support

Sharing

We heard that:

• there is a need for transparency about what information is collected and who it is shared with
• people want the Care Record to make accessing and sharing information more equitable across the workforce in all the community health and social care services people get support from.