How can we ensure that the English NHS can cater for the ever rising demand for increasingly expensive healthcare in a period of financial austerity the like of which has not seen for 30 years?
The government’s answer is embodied in its ‘Equity and excellence – Liberating the NHS’ white paper, published last month.
Its major premise is that regulated competition amongst care providers (moderated to ensure that all providers deliver best-practice care known to deliver good outcomes) is a necessary prerequisite to obtaining better outcomes at the lowest cost per patient.
This premise necessitates a wider role of informatics within the NHS. For choice of treatment and provider to be meaningful (and so to drive competition) patients and carers need relevant information.
Involving patients in their care has long-term potential to reduce morbidity (and therefore NHS costs), improve outcomes and increase patient satisfaction.
Examples include giving patients copies of their up-to-date care plans, providing easy access to relevant NHS information and support from elsewhere when patients are unsure what to do.
The white paper also wants to give patients control of their records and the ability to download and distribute them in a standard format. This is a welcome step in the right direction – for clinicians as well as patients.
However, the emphasis on provider and clinician accountability, patient choice, and use of records, will undoubtedly accelerate the implementation of electronic patient records.
Information for carers and patients
When it comes to providing information for GPs, carers and patients, the new consumer body, Health Watch England, will presumably have a say in what is provided.
The white paper says the NHS Health and Social Care Information Centre will commission and collate information, and the new NHS Commissioning Board will set the data and IT standards to make this work.
There will also be a new market in healthcare information, while NHS organisations will be expected to take responsibility for the quality and accuracy of the data they provide.
The clarity about the position and permanence of the Information Centre is welcome. However, there are still plenty of questions to be answered about it. For example, the white paper says: “We will seek to centralise all data returns there.” Does this include data provided by patients and provider staff?
To expect staff to provide data on the quality of the services their employer provides is worthy but carries risks. In the extreme case, the proposals are asking staff to act as whistle blowers, and the NHS has a poor record when it comes to respecting whistle blowers. Further thought is needed about how and where such information should be used and shared.
Good quality data should be complete, accurate, relevant, accessible and timely. It is unrealistic to expect the Information Centre to do anything but detect possible anomalies in the data it receives, and to pass questions back to the data sources for investigation.
It is safer and cheaper to check and correct data as near to its source as possible, doing as much as possible during input. This implies giving the originators the tools, expertise, time and motivation to do this. Some central facilitation of data quality practices, as exemplified by PRIMIS+, would pay dividends for providers, and the NHS as a whole.
Once collected, the presentation of results to patients and the public in a way that is easy to use and attracts interest is a particular skill. This is a major opportunity for informatics suppliers with strong ethnographic skills.
Obtaining and using patient outcomes data is gold standard stuff, but an intellectual and practical challenge. In many cases, all that can be expected are immediate outcomes – for example, no post-operative infection, no readmission within x days and a good patient experience rating.
Many outcomes are slow to show (cancer survival rates) and/or are difficult to measure (quality of life in chronic diseases such as diabetes or arthritis). Patient-related outcome measures will provide additional outcome-related data. Undoubtedly, though, there will be advances that allow long-term outcomes to be forecast in the short term.
Information for commissioners
We can assume that the data used by patients and clinicians for feedback and decision making is likely to be in aggregated form. Individual patient data will be required by the contracting and payment process, but the identity of a patient only needs to be known by the service provider and the patient’s GP.
Steps should be taken to anonymise data for many any other users, using privacy enhancing technology at source. Such technology is readily available, obviating the need to apply for exemptions to the Data Protection Act under section 251 of the NHS Act 2006.
However, one of the fundamental omissions from the white paper is any discussion of the information on which commissioning is based.
Initially, a large part of this will be from past commissioning, but increasingly it should be derived from the health status and needs of the population being served, viewed in the light of the National Outcome Targets (set out in the outcome framework issued to support the white paper).
Commissioners have always found this the most difficult information to obtain, not least because lifestyle is a major determinant of health status and so of health and social care needs. Will generation / collation of this information be a function of the local Public Health unit? Will there be national guidance to facilitate its production?
Even if there is, it is clear there will be a major opportunity to develop systems and services to handle the commissioning and contracting process.
A maximum management allowance per GP consortium is not much of an incentive to join one, and so far more GPs have expressed disinterest than enthusiasm. At present it seems likely that many consortia will outsource most of their commissioning related work.
Funding IT systems
The white paper makes no mention of the future of the National Programme for IT in the NHS, although it says, intriguingly, that “NHS services will increasingly be empowered to be the customers of a more plural system of IT and other suppliers.”
This is extremely good news, if it implies (belated) recognition that, as a complex adaptive system, the NHS is best served by an ecosystem of informatics systems, underpinned by NHS-wide infrastructure services (such as the Personal Demographic Service and Transaction Messaging Services).
The corollary of the approach outlined is the implementation of a set of informatics standards to enable interoperability across the NHS, and beyond where necessary. The emphasis should be on the practical rather than theoretical perfection.
Specific requirements for informatics standards are mentioned in the white paper and these standards should be clearly scoped and form a coherent set. Standards for electronic patient record content and presentation will impact clinical practice. Clinicians and patients own the requirements, but the standard should be developed with input from informaticians.
Whether you like the underlying competition motif or not, this white paper contains proposals to achieve goals that most of us would go along with.
The authors acknowledge that they have only provided a framework for further discussion and development. One mark of the sincerity of the government’s approach will be the impact that the consultations on it on the proposals.
I hope that this review will give my fellow health informaticians and others food for thought, and a somewhat better basis for engaging in those consultations.
Ian has set out his views in more detail in ‘An Informatician’s view of the white paper, Liberating the NHS.’
About the author: Ian Herbert is a health information systems specialist with 38 years experience in computing and information technology. He worked on the National Programme for IT in the NHS and previously led the team that produced the Update Primary Care System, which grew out of work undertaken as a research fellow at the University of Exeter.
He is currently vice-chair of the British Computer Society (BCS) Health Informatics Forum and an active member of the BCS Primary Health Care Specialist Group. Ian also sits on the BCS Specialist Group Executive Committee and is a BCS Council member.