A report from the Parliamentary and Health Service Ombudsman has focused on the single patient record, with recommendations for end of life care as an initial use case.
Ombudsman Paula Sussex says: “Nowhere is strong communication more important than in the provision of end of life care. When systems and teams communicate well, patients are more likely to receive the right care at the right time and clinicians are better equipped to navigate the complexities of moving between different care settings. When patients and families are given clear explanations, and when crucial conversations happen early and with sensitivity, they feel supported and better equipped to face the next steps, however difficult they may be.”
Based on experiences of families and clinicians, Sussex makes recommendations across three areas: confident, skilled, and compassionate communication with patients and families at the right time; clear outcome measurement including patient and family voices; and effective information sharing between teams and care settings.
Casework has identified communication failings between different teams involved in patient care, the ombudsman reports, including delays in decisions about treatment or next steps, causing confusion for patients and their families. Where patients move between settings and information does not follow them, it is observed that this can impact continuity of care. Unclear ownership of information, a lack of reliable mechanisms to ensure critical information follows patients, and associated lack of coordination between services creates “distressing circumstances” for patients and families, Sussex adds.
Clinicians highlight that movement between settings is where information sharing most often breaks down, that EPRs are still not reliably shared across organisations or used consistently, and that pressure on time and staffing capacity limits good record keeping. The ombudsman also notes that electronic palliative care coordination systems (EPaCCS) have not been implemented consistently across England, that where they are present, “only a limited proportion of those who may be eligible” are receiving one before their death with limited recording of preferences for care, and that interoperability issues affect consistent sharing to settings like care homes and ambulance trusts.
The SPR is in the early stages of development, Sussex acknowledges, adding: “But as it develops, we would like to see an urgent focus on end of life pathways as an important area for the rollout”. The SPR should ensure critical end of life information like advance care plans, ReSPECT forms, and DNACPR decisions are accessible across care settings, building on the work done on EPaCCS. Sufficient investment in training will also be required on how patient record systems should be used on the frontline, Sussex continues.
Wider trend: Single patient record
The Department of Health and Social Care has published an impact statement noting the rationale behind many of the key measures introduced in the 10-Year Plan, covering potential impact, costs, benefits, and risks. It shares that the SPR will take several years, and costs will include product development, tech and data integration, delivery, implementation, and commercial costs. Investment will be needed to ensure staff such as paramedics and community pharmacists have the same access to patient data as GPs and those working in hospitals, and to maximise value, costs may also need to be considered for translating care records into plain English to be understood by patients.
The Health Bill second reading at the House of Commons has attracted a number of questions and comments from MPs around data privacy, modernisation, technology, health inequalities, and the SPR. Introducing the Bill, secretary of state for health and social care James Murray answered questions from those in attendance, highlighting ambitions “through local health watches across the country…to bring the voice of patients closer to the people who plan and deliver services”. Investment made in the SPR will improve the linking of information across systems, Murray noted, referring to the programme as “nothing short of a game changer”. When challenged on data privacy and security, he added that the SPR “does not move data from one system to another; it preserves the data where it is, and builds links between systems so that one person, whether a clinician or a patient, can see all the data at once”.
The DHSC has conducted an impact assessment designed to support proposed legislation for the SPR contained in the recent Health Bill, and assess impact across nine protected characteristics including disability, sex, race, and sexual orientation. The department reiterates current policy aims for the SPR around giving patients control of their data and medical history, offering a “single version of the truth” accessible across different care settings, and forming the foundations for patient information to flow safely and seamlessly between care providers. The record is designed to “significantly reduce” the admin burden on clinicians, it states, supporting better-informed decision-making and more coordinated care, including, in the future, adult social care.
