I first met Mohammad Al-Ubaydli, founder and chief executive of Patients Know Best, ten years ago and heard his idea that all patients should have access to and control of all of their medical and social care records. To me it was something that should obviously happen, not only because why should anybody else control what matters most to the patient, but also because health systems have to change from health professionals doing things to people to people taking charge of their own health with the support of health professionals. Giving patients control of their records would be a necessary step in that transformation. But how to implement this simple but powerful idea? As T S Eliot wrote, “Between the idea/And the reality/Between the motion/And the act/Falls the shadow.” Making things happen is hard but possible, as Patients Know Best has discovered on its ten year journey, which is still far from its end.

Giving patients control of their own records and a secure link to the health system is also a step that allows online consultation; patients contributing data, perhaps from devices they wear, to their records, making appointments, and keeping online health diaries; computer-based history; and much more. Perhaps more importantly than when we began it also allows patients to own their data, something that becomes increasingly important in a world where giant companies are using people’s data for their own ends.

Becoming the chair of Patients Know Best

Soon after our first meeting Mohammad asked me if I would be the chair of the board of Patients Know Best. I wasn’t sure that I was suited to the role as I had no experience of lone start-ups and investors, although I did have experience of starting businesses within the relative safety of larger organisations. I knew as well that more than 50% of start-ups fail. But I agreed to be the chair because I thought the mission so important and was greatly impressed by Mohammad, his wisdom, insights, calm demeanour, and resilience. You need boundless optimism, even a kind of mania, to succeed with a start-up, and Mohammad I’ve discovered over the years has it.

Do patients know best?

Some health professionals, I know, will have spluttered at me writing in the first paragraph that “health systems have to change from health professionals doing things to people to people taking charge of their own health with the support of health professionals.” Patients, they think, are often weak and vulnerable, they need support. There are times, I agree, when we are unconscious, bleeding, or in great pain that health professionals have to take charge, but that’s only a small part of health care. If you have meningitis then whether you live or die will be determined by the clinical team, but if you have diabetes or any long term condition then how well you do depends much more on you than the clinical team; you might wish it were not that way, but it simply is. And most of health care now, and certainly the costs of health care, are driven by patients with long term conditions, often multiple conditions, not by patients with conditions like meningitis.

Is Patients Know Best a good name? Some health professionals objected: of course, patients don’t know best—it’s the professionals who have the knowledge. But that simply isn’t true when it comes to individual patients: they know best what matters most to them. It’s almost a parallel of “the customer is always right.”

Why start in Britain and why a start-up?

Mohammad, although a Cambridge medical graduate, had been living in the US and become an expert on personal medical records, but he decided that it would be best to launch the business in Britain. Was this the right decision? The NHS is a tough place to do business, and disasters like Connecting for Health, a government scheme to create a paperless health system that went horribly wrong, had made people almost phobic about information technology. But the NHS held out the possibility of achieving the vision for all the people not just the wealthy ones.

There had been attempts by huge companies like Microsoft to create personal health records, but they had failed. They had failed, Mohammad realised, because they had produced a product only for patients. Health care depends on the relationship between the patients and the professionals, and you need to work with both sides. The current reality is that most of the information about a patient is held by the health system, usually in multiple files. A health record is useful only if it includes that information, so it’s necessary to work with the health system, a long and arduous business. Microsoft might know how to reach millions of consumers (patients), but it wasn’t set up to grapple with health systems.

Integrating care

Companies selling electronic record systems know about selling to the health care system, but they were mostly stuck in the old mind set: it was health systems not patients that controlled records. So they paid little attention to patients and made large sums selling systems to hospitals. Unfortunately many of these systems can’t be connected together and have increased rather than decreased the fragmentation in the system when it’s increasingly realised that it’s integration that’s needed.

Patients Know Best’s vision from the beginning was that our system would be web-based and pull in records from hospitals, general practice, mental health, community services, and social care. In this way a care system that is physically, financially, organisationally, and culturally fragmented can be integrated around the patient, the one constant in the system.

An emerging product in an emerging market

Launching an emerging product in an emerging market is hard. There was no ready-made market for giving patients control of their records. We had to try and convince some customers that this would be a good thing to do, and many people were resistant: to give patients control of their records seemed like a step into a dangerous unknown. Patients, perhaps unsurprisingly, were keener than health professionals, but selling to patients was not a viable business option—and, as I’ve said, it’s the health system that has the information on patients.

We did manage to convince some early-adopters. Indeed, we didn’t need to convince them: they “got it” straight away. One of the first was Susan Hill, a paediatric gastroenterologist at Great Ormond Street. She cares for children who have limited gastroenterological function and have to be parenterally fed. They are scattered around the country and have to have regular blood tests and their parenteral nutrition adjusted. As Hill says, doing this with a paper-based system is not safe. She and her team needed a secure, flexible way to communicate with the patients, their parents, their GPs, and the suppliers of the nutrition, and Patients Know Best fitted the bill. Hill found two unexpected benefits: adolescents, who often become uncomfortable with being treated, remained much more engaged with Patients Know Best; and transferring patients from paediatric to adult care, always a difficult transition, was made much easier.

It’s demanding being an early-adopter and champion who “gets it.” You might “get it,” but many of your colleagues will not. You have to convince them and help them through the changes in how they work and the difficulties that inevitably arise with any new system. You also have to find a way of paying for the system, which is often not easy. Over the years we have found more individual clinicians and managers who “get it,” and our users’ meeting brings together, I’ve realised, a group of people who have the entrepreneurial energy to transform health systems. Often these champions are working alone, and they enjoy to meet with like-minded people.

Building a successful business

Unfortunately, it’s impossible to build a successful business with scattered customers, and the true value of Patients Know Best comes from having large numbers, eventually we hope everybody, using the system. Because the data are stored by PKB (without us being able to access data about individual patients) a patient who travels from Wales to be treated at St Mary’s Hospital in London (or vice versa) can let the team in the hospital have access to her information immediately. There’s no need to transfer files; and when they return home Welsh doctors can immediately see what has happened in London.

So the mission and business challenge is to sell not to individual clinicians or units but to whole systems. Our chance came when North West London had the vision and courage to contract with us to ultimately provide Patients Know Best to all 2.3 million people in North West London. It is a major challenge to integrate different hospital systems, dozens of different systems within hospitals, GP systems, and eventually other systems. Many of the hospital systems are old systems full of problems, and sometimes these problems are exposed during integration. It’s also a challenge to let everybody know what’s happening and to convince them of the ultimate value.

Responding to proposals

We also have to pursue business opportunities across the NHS, responding to requests for proposals. We respond to two main sorts of proposals: those for patient portals, giving patients access to records but not control over them; and integrated digital care records, which allow clinicians but not patients to access all the data about patients. The procurement process is long, slow, and unpredictable, but they are a fundamental part of doing business with the NHS. And, of course, there are four NHS’s (as well as multiple bodies within each), creating more challenges. We have, however, managed to make a lot of progress in Wales, and it may not be long, we hope, before all patients in Wales can use Patients Know Best.

Antagonism to the private sector

One of the challenges of doing business with the NHS is that some staff are antagonistic to the private sector. Some have the misguided idea that private companies are interested only in profit, whereas any business academic will tell you that successful businesses are built by providing great products and services not by concentrating on profit: you can’t make money by thinking about money. Those in the NHS unsympathetic to the private sector accept, albeit with reluctance, that the NHS can’t make its own drugs or computers, but when it comes to information technology they think that it may be best to do it themselves. Sometimes this is successful, but usually it isn’t. It makes sense to “buy rather than make” because companies can do it better and cheaper by investing, specialising, and hiring skilled developers, who are in short supply.

Patients Know Best has tried to respond to anxieties about the private sector by becoming a Benefits Corporation (B Corp). Firstly, this means modifying the shareholder articles of association to say that Patients Know Best will consider not only profit in making decisions. Secondly, we have to encode our mission in our business model—that is, that patients know best. And, thirdly, B Corps are measured on things like paying a living wage or better (we pay much better), meeting tough targets on gender and other equalities, having strong environmental policies, occupational health, and much more. Each year we have to reach tougher targets to remain a B Corp.

Diverse, mission-driven staff

Fundamental to any business it its staff, and we now have over 50 staff across 12 different countries. We have developers, sales staff, and a Success team, which helps customers get their systems up and running. I attend bimonthly staff meetings and am struck by the talent, youth, and diversity of the staff. I recognise that people are excited by what we are trying to achieve, not just make money but contributing to the transformation (and so survival) of the NHS and other health systems (we have contracts outside Britain).

Patients Know Best does not have offices (an unnecessary overhead) and people work from home or are out on the road selling and helping customers. This means we are able to hire extremely able software developers, many of whom live outside Britain. The competition for such talent is intense. Many of the Success Team and other staff have worked many years in the NHS, often as nurses. At the meetings I see staff solving tough problems, often tough intellectual problems—like staying ahead of potential hackers with advanced cryptography.

Funding and investment

Companies fail because they run out of cash. So it’s essential to keep a tight eye on cash flow, and it’s usually necessary to raise investment. Despite my business school degree, I knew little about investors and investment before I joined Patients Know Best. I’ve learnt something. To raise equity you need a good story and, once you are launched, momentum. One of the challenges is to decide on how fast to go: whether to raise lots of money, invest in staff and product, and grow fast; or whether to be more cautious. Those who invest early in companies know that many will fail, and they love a company that grows fast and “cashes out,” selling the company to a bigger organisation. One of the risks for founders is that they are “diluted out” by investors and lose control of the company, meaning that the company may divert from its mission or lose its soul.

Doing business with the NHS rarely allows fast growth, which is why investors, although recognising that health care is about a tenth of the economy or more, are wary of investing in businesses working with the NHS: “I don’t ever want to invest in a business that involves anybody in the NHS losing their job,” one venture capitalist of told me. (Patients Know Best does not make NHS employees redundant.). Thanks to an excellent finance director Patients Know Best has managed to stay solvent with the company still controlled by the founders.

A difficult decade but a bright future

The past decade has not been an easy time to do business with the NHS, but then there has never been an easy time. We started at the time of the financial crash and the beginning of austerity. Throughout the decade funding has been tight. Gordon Brown was prime minister when we began and nobody was clear whether he was going to undo the reforms introduced by Tony Blair. Then came the Tory government and the prolonged haggling over the complicated and controversial reforms introduced by Andrew Lansley. The next Secretary of State for Health, Jeremy Hunt, ignored many of the reforms before Brexit put new strains on the NHS. The acronyms—think STPs—have continued to flow, and reforms have happened at different rates across the English NHS, while the devolved nations have diverged further from the English system.

Against this backcloth Patients Know Best has doggedly pursued its mission of eventually giving all patients access to and control of their records, recognising that that will provide a base for online consultation, feeding patient data directly into records, and much more—part of a true and essential transformation of the NHS.

Richard Smith was the editor of The BMJ until 2004.

Competing interest: RS is the chair of Patients Know Best. He is not paid but has equity in the company. He has also invested £20,000 in the company.