Patient Held Record Workshop with the NHS England Patients Online Group

Phil Barrett28th July 2015

As part of the Ripple Programme Open Citizen offer, we have begun engagement with patients to look at what people would want if they have access to their own health record online.

We are working on behalf of the 25 NHS integration pioneers and we see our role as listening to citizens and researching existing information to determine the key considerations when developing an integrated digital care record that can be accessed by both professionals and citizens.  We will then report back on our findings, highlighting common themes and expectations that citizens have.

Sitting alongside this report will be a toolkit or a guide describing how we have involved people in the development of the demonstrator patient held record that we will be building as part of the Ripple Programme.

To start this work we held a workshop with NHS England’s Patient Online Group in July 2015.

Patients will want to use their online records in different ways to clinicians.  The electronic systems which currently hold information about patients or people who use social care services, have been set up to support the organisations and professionals who provide care.  Although, in some areas, there have been changes to allow for patients to contribute to their records, in the main, the structure and language of records is still very much focussed around the sharing of clinical or process data.   This is our opportunity to explore what patients want and to shape the future of online integrated digital care records so that they become more of a tool for patients and citizens to use to.

So what did we want to know?

We felt that it was important that participants knew what questions we planned to ask – this was partly so that they felt they were prepared but also, because they represented other patients or were members of other patient networks, they had the time to ask the questions and bring views of others to the workshop.

This is the start of wider engagement around these key questions and future reports and feedback will reflect comments from other people and networks as well as findings from the existing research and activity around patient held records.

The questions:

  1. What would patients wish to see within their integrated care record?
  2. How do patients wish to interact with their integrated care record?
  3. What would patients wish to contribute into their own integrated care record?
  4. What concerns, considerations and reassurances need addressing when developing and implementing a patient held record solution?

The report from the workshop is attached but in summary, key points raised included:

  • Patients would like to be able to filter the information in their online record so that they could find what they wanted to look at – and the record should include xrays and video
  • The language of clinical records could be very complex and full of acronyms – how could this be simplified?
  • A co-produced care record developed in partnership with the GP was widely supported – but how would this work in a hospital setting or where a person was looked after at home or in a residential home?
  • Consideration of how a record would work where English was not a persons first language – would the record be translated
  • Patients would like the ability to add their own notes including what their treatment preferences were or where they were a carer for someone else with a health condition or care needs.
  • Patients would like a record that sent alerts when information had been added so they could see what the changes were and take action if necessary
  • What provisions would be made for people who would not or could not access a record online?
  • Patient would like to see a system that could incorporate feedback or data from smart phone or wearable tech apps
  • A belief that if patients had access to their record they would become more involved in their own care and this could help self care and lead people reducing demand on the NHS.
  • And an acknowledgement that any records system is only as good as the information it contains so any drive towards an integrated system across health and social care had to have a focus on staff training so that all staff understood the benefits of filling in online records.

We also trialled the use of a padlet wall to collect feedback.

If you have any thoughts or comments about what you would like to see in your integrated digital care record, please let us know by using the comments box below.

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