iESE publishes new Fair Care Charter

iESE’s Fair Care Charter, developed in conjunction with local authorities and technology providers, outlines the principles iESE would like to see become industry standard around information and data management in person-centred care practice.

The Fair Care Charter covers three key key areas of information management: Systems, Control Over Records and Meaningful Records. The aim is that local authorities will sign up to follow the Charter in their own care services and that the document will also set the standards and principles iESE wants the new Care Management System (CMS) which it is currently developing to meet.

Sherif Attia, Design and Research Lead at iESE, believes the time is ripe for public bodies to drive greater standardisation of data management and information processing within the health and social care space, with the need for greater interoperability between public bodies never more apparent than during the COVID pandemic.

Another key driver for iESE is the empowerment of care recipients, their families and supporters. Through the research phase, iESE identified that care users have needs and desires around data and privacy that are inadequately met by the current system. The work iESE is doing around the Charter and the CMS seeks to offer them greater opportunity to contribute to and control their own records.

It is about creating a system that is inclusive and if you are affected by technology having some level of purchase over that. One of the key drivers is giving people control over their records. The whole idea is to give a voice to the user and allow them to own, contribute and control their own records where possible. Where that is not possible, we want to empower their guardians to do that.

Recipients of care who want to view their own records must currently request this information under the Data Protection Act 2018 using a Subject Access Request Form. In effect, people are locked out of their own records unless they make a formal request. This can take up to a month to be granted, after which the records still belong to the organisation rather than the individual. There is no opportunity to contribute directly to these records unless the care recipient or their guardian requests a change, however, whether the change is made is up to the authority holding the file.

As part of the development of the CMS, iESE is also working on an app called Life Tree, which would act as a digital passport of a person’s health record, and which could be contributed to by the care recipient. It would include the softer elements of a person’s life and wellbeing such as photos of their family and information about loved family pets, for example. It could also hold power of attorney documents.

“Life Tree will help people get their views across to the people who are looking after them. When people have cognitive decline, such as dementia, something like Life Tree would help ensure that what is important to them is maintained,” explained Attia.

One of the points in the Charter under the Control Over Records section states: We will give voice to care users by allowing them to own, control and contribute to their own records to the greatest extent possible. Where it is not possible for the care user to control the record, they should have the right to request inaccuracies are corrected in a simple way.

Under the Meaningful Records section, one of the points outlines: We will support the care user in sharing their records with their supporters and family and empower their guardian/care giver to advocate or challenge records on their behalf.

Attia added that as well as being a standard, the Charter outlines iESE’s design principles for the CMS. The section headed Systems, for example, states: We will drive innovation by using systems that not only interface to, but maximise the potential from, new systems and technologies. From self-reporting apps and sensors providing real time data to predictive analytics, we will allow new developments to reshape the role and function of the case management system.

“The Charter was developed in consultation with local authorities and technology providers. The Systems section talks around a system which places the care user at the centre and uses codesign to achieve that objective. It then explores how we want systems to drive innovation but also support best practice in terms of social care and then the final bit is about how the system should be interoperable to allow data sharing,” said Attia.

The idea is to challenge what is happening in the sector around legacy systems but also to put the care user in that conversation as well.

Attia added that the new iESE CMS which is earmarked for release in mid 2022 would need to meet the standards and statements set out in the Charter to be a success.

• To find out more about the CMS read the article on pages 4 and 5 of Transform Issue 25 - October 2021 Edition: https://issuu.com/ksagency.co.uk/docs/iese_transform_025_social_care_online_issue

• To find out more about the Charter contact: sheriff.attia@iese.org.uk