Understanding patient data

Data saves lives

Sharing data improves care and

can lead to better health for us all

Sharing data can make care better and safer for all those who receive it – even saving lives. 

The PRSB has teamed up with Understanding Patient Data to help produce a series of new videos to highlight the importance and impact of information sharing. At the PRSB we aim to produce better health and social care records for better care. As the NHS and social care embrace the power of digital ways of working we need to standardise the content so that information can be shared digitally whenever and wherever it is needed to ensure people can always receive safe, effective care. This will help patients and carers who will only have to share information once, and their records will be available in every care setting including at home.

As well as enabling better clinical care, that shared data can help us to better diagnose different conditions and develop new treatments. It enables us to spot patterns in healthcare, work out where more services are required and anticipate what may be needed in future. Patient information can also be used to better understand certain conditions, and work out new and better ways to cure and eradicate them.

The Understanding Patient Data campaign was set up to support conversations with the public, patients and healthcare professionals about how health data is used. The campaign will be launching a series of films throughout March to cover the following topics:

– An asthma attack and patient data
– A cancer diagnosis and patient data
– A dementia diagnosis and patient data
– Managing diabetes and patient data
– A heart attack and patient data

An animation will follow shortly that explains the role of the PRSB and how our work will enable better sharing of data for many purposes.

Why is it important we collect and share data?

It is critical that information can be recorded and shared for many reasons:
–  For research so services can be better planned and more efficient
–  For auditing so we can make sure services are of a high quality
–  For IT systems to enable better sharing across many healthcare professionals involved in a patient’s care

Find out more at understandingpatientdata.org.uk

 

How is patient data used?

Research – Researchers can use information to better diagnose different conditions and develop new treatments. It also enables us to spot patterns in healthcare, work out where more services are required and anticipate what may be needed in future. For example, public health officials can use data to increase disease awareness and prevent outbreaks of serious illnesses such as measles and whooping cough.

Patient information can also be used to better understand certain conditions, and work out new and better ways to cure and eradicate them. It can be used to monitor the safety and effectiveness of drugs, leading to better and safer care for all those who receive it. Using the right patient data in a safe and controlled manner is essential for the future of healthcare.

Find out more about how we share and use data
understandingpatientdata.org.uk

VIDEO LIBRARY

Supported by research on past patient data, a specialist confirms that Ann has dementia. Ann and Derek decide together to contribute to future research.

Heart attack patient

Patient data about Keith was used to avoid an allergic reaction and also helps future patients going through cardiac rehabilitation.

Sharing data about Diabetes

Mandeep is looking forward to her first baby, but she’s been struggling to keep on top of her diabetes, and finds the constant testing stressful. Data from other women with diabetes helps to improve Mandeep’s care and patient data about her will help the care of others too.

ASTHMA FILM

By comparing patient data across the UK, Alex’s hospital helped improve the lives of young people with asthma in their area.

Data from previous cancer patients can help others

 

Personalised care and support planning for people with severe mental illness

A review of a sample of current care plans, and the way they have been developed, may be helpful in identifying the priorities for this improvement. The PRSB Implementation Guide provides more detailed explanations about each element of the plan, including advice on how the planning process might be best conducted.
These questions might form a checklist for current plans to be compared with. 

1. Does the plan include an About Me section in which the service user, in their own words, can indicate the information they want to be available about their lives, their values, their interests, and priorities, available for all those who may care for them?
2. Is the approach to developing a care plan patient centred and engaging, allowing plans to be based on patient priorities goals, and aspirations, along with the actions they plan to take and the support that they will receive?
3. Is there space for a “formulation” to be recorded in which the person receiving care and the professionals who provide it, share and record the personal meaning and the origins of the person’s difficulties?
4. Are relevant procedures and therapies recorded?
5. Where relevant, are one or more contingency plans included for anticipatable disruptions, exacerbations, or deterioration, and do they include advice on what to do and points of contact for those called upon to respond?
6. Where relevant are additional supporting plans incorporated, (an example being an “educational and health plan” for someone with a neurodevelopment disorder)
7. Is a version of the plan available to a service user (if they wish to have it) in a form and format that they can understand and find to be of value?
8. How is a version of the plan available to the GP and other key parts of the health and care system?

Work conducted by PRSB and partners recently has looked specifically at the suitability of this approach to the development and documentation of care and support plans for people with Severe Mental Illness. This resulted in an updated version of the standard (v1.4), for use by any service and for any group of service users, but with some modifications to ensure that it meets the needs of this community. The approach to a patient centred process of identifying goals, hopes, and values, and the support needed to achieve them, is fully compatible with and can be conducted using, specific tools in use in mental health, such as DIALOG, DIALOG+, and ReQoL, for example. 

Where analysis indicates the need for improvement in the content and process of personalised care and support planning for patients with Severe Mental Illness, specific improvement projects should be instituted to co-design with service users and their representatives, and the relevant staff groups, new approaches, and documentation that would be of value in delivering improvement. The toolkit includes a range of existing resources that could be used to engage in this improvement work, including signposting to relevant existing approaches informed by patient experience-based design.

Moving to a single holistic plan

A review of a sample of current care plans, and the way they have been developed, may be helpful in identifying the priorities for this improvement. The PRSB Implementation Guide provides A key development, consistent with national policy on support for Personalised Care across all health and care sectors, is the move towards an individual with complex needs having a single, integrated, care plan, rather than a series of plans developed by different parts of the health and social care system in isolation of one another. For a patient with severe mental illness, the related concerns and challenges might form a very prominent part of such an integrated plan; many will also have concurrent health challenges and needs. The intention is that the relevant services work together to plan and wrap support around the patient and their family in an integrated way, rather than as a series of sequential or disconnected encounters in which the service user or their friends and family have to adopt the role of the integrator.

A starting point would be to agree priority groups of service users who may already have more than one care plan because they need care from more than one part of the system of health and social care. This could be initiated by looking at service users registered with some sentinel practices or PCNs. Alternatively, the approach might focus initially on people with defined co-morbidity or risk that entails collaborative care with agencies beyond specialist mental health services.

The focus here is on the process of care planning and agreement on what should be shared, rather than solely on the technology used;

1. What is the process to agree which professional will initiate care planning and act as the “lead point of contact” for the service user?
2. Will initial plans be agreed with the service user in joint consultations or sequentially? Where and how will they be conducted?
3. What will be the process to agree the elements of the plans which should be available to professionals and potential authorised users beyond the immediate care teams, (A&E services, Ambulance Services, Social services, etc.) with the service user’s consent?
4. How will elements of the plan be updated following consultations in a way which is proportionate, to allow contact and progress notes to be maintained by the service conducting the consultation, whilst avoiding unnecessary work for partners in care if there is no significant change to the personalised care and support plan?
5. What are the implications for workload, logistics, and administration arising out of these decisions?

The answers to these questions and others will best be elicited through focused joint working, grounded in real, or at least realistic examples. This will entail process mapping, and co-design with a range of professionals, service users, and families. Resources from the toolkit and outputs from the Simulation element of this project will be valuable. Some organisations would adopt an approach such as a Rapid Process Improvement Workshop, planned over several weeks and conducted over a number of sequential days, to develop prototype ways of working that could be tested in the field.