In April 2002, the National Programme for IT (which in 2005 became Connecting for Health) set out with the ambitious vision of creating a paperless NHS. The programme was expected to cost £2.3 billion and was called the biggest information technology programme in the world. Eleven years later the programme was abandoned with only small achievements at an established cost of £12.7 billion and a probable cost of nearly £20 billion. Not only had the programme failed to achieve a paperless NHS it had also set the cause back by making NHS staff almost phobic about information technology. But now the vision of a paperless NHS is close—and not through an expensive top-down megaproject but through a combination of often inexpensive bottom-up projects.

General practice has had electronic records for decades, but there is more than one system, and the records are not connected with the records of hospitals, mental health, and social care. Increasingly hospitals have electronic records, but they use different systems that don’t connect to each other, and many hospitals have hundreds of what are called legacy (old-fashioned, independent) systems that are not connected. Mental health and social care have other different systems.

The one thing that connects these systems is the patient, although usually patients don’t have any access to the many records about them. The NHS in London has now run a procurement for a personal health record, and after a long process Patients Know Best, which I chair (see competing interest statement at the end) has been selected as the preferred bidder. London has five Integrated Care Systems, and each of them will decide if and when it wants to implement a personal health record. North West London is proceeding with registering patients at an accelerating rate.

A personal health record doesn’t sound that exciting, but what Patients Know Best does will be important in bringing about the transformation of health care that has long been needed and has become more urgent with the NHS being under huge pressure. In short, Patients Knows Best gives patients access to and control over all their health and social care data, including records from hospitals, general practices, mental health, and social care and all results of tests in real-time as they become available.

This conceptually simple but culturally complex development does two radical things. Firstly, it integrates these varied providers around the patient in a way that has never been achieved—and probably never will be—institutionally. With the consent of the patient these providers can achieve a complete picture of the patient not just a knowledge of one part of their care. This is particularly important because most health and social care is now concerned with people with multiple problems. Helping one organ or one problem is not enough.

The second radical development is that the patient (or citizen) is put at the centre of care with the recognition that how well patients do with the chronic, incurable diseases that are now the main concern of healthcare depends primarily on the patient and his or her carers and community. This is an uncomfortable recognition for some patients (and clinicians), but it’s the simple reality when a patient with, say diabetes, spends three hours a year in contact with clinicians and 8757 hours without that contact.

An example of how Patients Know Best can help transform care is provided by a scheme for patients with inflammatory bowel disease. Like most chronic diseases it comes and goes with occasional flare-ups. At any one time many patients are well. Yet the tradition is often to review patients every six months in outpatients. Many of the patients seen are well, and yet when they become unwell it may take them a while to see a consultant.

Through Patients Know Best patients can take charge of their care, access the results of their tests, record their symptoms, and communicate with the hospital team. In addition, the hospital can provide standard advice to patients through the system. Patients who are well can let the hospital know and avoid being seen, and the patients and clinicians can see the patients’ test results.

Many patients joined the scheme, hoping to avoid routine visits, be seen more quickly when necessary, and to take greater charge of their own condition. They got what they hoped for: visits to outpatients and the emergency department and admissions all fell, but patients who were sick were seen within a week rather than usual six weeks.

Unfortunately, because of the way hospitals are paid, income to the hospital fell; and the clinical team had to adopt a way of working that felt to them unsafe and uncomfortable even though there was no evidence of patient safety being compromised. The hospital abandoned the scheme, and the consultant who pioneered the scheme left.

This story illustrates what everybody knows—that technology alone cannot change practices. New technology is a necessary but not sufficient condition for the transformation that health systems need to survive and meet the changing needs of the population. Changing clinical pathways, policies, working practices, and cultures is hard, but essential. 

Often hospitals install technology, but fail to take full advantage of what it can do. For example, patients need to register to see their data via the internet, and clinicians will have richer experiences with patients if they encourage the patients to register and engage. This requires some education of clinicians and also asks them educate within what are often pressed consultations. It simply doesn’t happen on a large scale, meaning that most patients don’t have access to Patients Know Best. Hospitals have the technology but are slow to use it, despite the evidence that most patients like having electronic access to their data. Clinicians have been nervous as well about patients getting immediate access to test results, including results that might mean bad news—but most patients like to get results quickly, and they receive them together with information on what the results mean.

Patients Know Best has been going for more than a decade, and it’s been a long, tortuous, and complicated journey. We have watched many other start-ups fail. But we have learnt a lot about what hospitals and other providers need to do to ensure that patients get quick and full access to the system. We have learnt to ask providers before signing contracts to agree to a programme that will ensure that patients get rapid access to their data; and we can point to a growing range of examples of where providers have transformed pathways, bringing benefits to patients and getting more value from the health system.

Before the London procurement we had contracts to serve some 12 million patients, and London taking up the system may add millions more. Importantly patients who have access to Patients Know Best can get access to their data through the internet wherever they are in the world. They can also give clinicians who are caring for them access. Many patients travel across boundaries to receive care, and unfortunately most record systems don’t move with them—but Patients Know Best does. There is thus a “network effect,” which means that the more patients who use the system the more useful it becomes.

Through this bottom-up network effect, the nearly-20-year-old vision of Connecting for Health can be achieved. Every patient in the country and all those caring for them can have access to the records and data wherever they are. This may take a few more years to achieve, but it will be achieved at a fraction of the cost that was spent on Connecting for Health.

Richard Smith was the editor of The BMJ until 2004.

Competing interest: RS is the unpaid chair of Patients Know Best, but he does have equity in the company.