An Information Revolution is one of a series of documents for consultation published subsequent to the White Paper Equity and Excellence: Liberating the NHS. It is part of the Government’s agenda to create a revolution for patients - “putting patients first” - giving people more information and control and greater choice about their care. The information revolution is about transforming the way information is accessed, collected, analysed and used so that people are at the heart of health and adult social care services.
The Government wants the information revolution to benefit everyone who uses health and adult social care services. Early work on equalities has identified some areas on which there needs to be a focus, such as ensuring there is sufficient support and access to information for people who need it. Questions in the consultation document and the Easy Read version invite comments and suggestions on how we can address this and other equalities challenges. There will also be engagement directly with groups and representatives at consultation events, as part of ensuring that the information revolution fully promotes equalities and patients’ rights.
COMMENTS ON DEPARTMENT OF HEALTH
LIBERATING THE NHS: AN INFORMATION REVOLUTION - A CONSULTATION ON PROPOSALS
The Royal College of Physicians of Edinburgh is pleased to respond to this consultation on the important issue of improving information within the NHS for clinicians and patients. Comments are referenced to the consultation questions and are largely restricted to the perspective of physicians on the services they provide within the acute care sector.
General Comments
The College supports the aspirations within the consultation document, as all clinicians would welcome improved access to relevant and accurate clinical information and recognise its contribution to high quality clinical care. The paper covers the full range of information sources and systems which, if improved, would indeed transform the delivery of patient care.
A key barrier to successful implementation, however, will be the financial pressures facing the NHS and the scepticism of clinicians following a series of information projects which have been highly disruptive in their development and introduction and failed to deliver the promised benefits. A culture change will be required, driven by effective and reliable (secure) information systems, to encourage the use of information and support systems by clinicians and patients.
The pace of change will necessarily be slow and may dictate the time-table for other related reforms, especially patient choice and control and effective commissioning. Public expectations should be managed carefully given the implication in the White Paper that these reforms will be in place within the next 2-3 years. The College has also responded to the consultations on greater choice and GP commissioning.
Points relating to consultation questions
Q.1: What works well currently in information for health?
Examples of what appears to work well include the largely charity based health awareness schemes and, to a limited extent, the public information style healthcare awareness campaigns. Data on standardised mortality ratios and healthcare associated infection rates also seems to work well. However, data on activity levels either by named professional or diagnostic code have proved unreliable and added to the low confidence of doctors in the resulting statistics.
In sharp contrast to what fails to work well, data capture at the point of care works particularly well for unplanned emergency work. This includes quality measures which are very difficult to capture in other ways. Quality measures are essential if effective commissioning and patient choice are to become realities.
Q.2: Important uses of information
Undue importance has been put on the use of information by the financial departments of NHS Trusts for the purposes of benchmarking activity, contract monitoring and attracting funds. Quality measures have taken second place and should acquire higher status within Trust monitoring systems. The information types listed within the consultation document all have an important role to play. The most important users of information are patients and medical professionals, enabling them to deliver the best care at the right time, although the importance of overall performance monitoring is also recognised
Q.3-Q.5: Is the vision for an information revolution comprehensive and/or affordable?
The description of information capture appears comprehensive and relevant although highly ambitious and the College fears is unrealistic, certainly in the short to medium term, given the current state of rudimentary information systems within many hospitals (eg medical records) and the continuing “scattergun” approach across England with the implementation of many different hospital-based systems.
The document makes regular mention of standardised datasets but little is said about a national IT system. The challenges of inter-operability between different local information systems should not be underestimated.
The consultation document makes little reference to information published in the media that may be of dubious accuracy and lead to loss of patient confidence eg recent problems with the MMR immunisation levels. A strategy to “kite mark” information may be helpful for patients.
Q.6-Q.8: Patient records
The College welcomes the recognition of the work undertaken by the medical Royal Colleges in setting standards for medical records, which takes into account the future challenges of electronic records and record sharing between providers and across sectors. However, implementation of robust electronic record systems that will function effectively across the UK (including private providers) remains a significant challenge and will be among the highest priorities for financial resources, limiting other aspirations in the short to medium term. A robust electronic patient record system is central to all patient care and failure would have dire consequences.
Q.9: Supporting patient use of Information
The College has responded to the linked consultation on choice and control and stated that consultation time will be critical if patients are to be supported to understand options and make choices. The dangers of misinformation and/or patients misinterpreting accurate information should not be underestimated. To address this, consultation time for doctor and patient must be increased - technology has its place but patients value the direct input of their named healthcare professional to support their choices and decisions, particularly at times of personal stress.
Patient access to computerised records is an evitable and largely welcome development and will both inform and increase the accountability of patients for their own health. However, safeguards must be put in place for those less able to access and/or interpret the contents, as clinicians need to use medical terminology and shorthand in the interests of efficiency and functionality. Misunderstanding records may lead patients to be anxious and/or raise complaints unnecessarily.
Q.16 and Q.17: Creating a seamless/joined up information service
The College agrees that the benefits of a truly seamless and joined up information service would be tremendous. The obvious links are between general practice and secondary and tertiary care and within secondary care, between the private and public sectors. This may bring particular benefits for emergency care in larger urban conurbations where patients may attend different providers and where each will have their independent set of notes.
Q.24 and Q.26: Information for professionals
The ambition to deliver timely, high quality information for healthcare professionals based on their own data is hugely important; the College believes this would be supported by most clinicians and will generate ownership and support accuracy. Thus far, a rather top down approach has been used, which is seen as rather bureaucratic and irrelevant and therefore of much lower importance than other daily pressures on busy clinical teams. However, local data capture will require resourcing in terms of both technology and time for healthcare professionals to limit the impact on direct patient care.
The availability of information to support professionals is essential for maintaining up to date practice (CPD and revalidation) and supporting individual patient care. Ensuring access to a range of reputable on-line resources from the workplace is essential but not always available, even in the larger teaching hospitals, and could be facilitated by universal PC based links to multiple resources supported by local library resource. Central negotiation by the NHS may provide a cost-effective solution to expensive annual subscriptions.
Standardised datasets with clear definitions will be critical to deliver useful and accurate information (including comparators) for patients, clinicians and managers alike.
Capturing patient feedback through an anonymised central data set brings problems of objectivity and a lack of accountability. Such opinion must be treated cautiously and subjected to triangulation before triggering action.