Dear Dr Today,

Can I ask you to accept the invitation to allow me to consult you online securely? I don’t usually consult you more than once a year, and I’m not expecting that to increase. I hope that the possibility of me being able to consult you online may make life easier for you and me.

Yours sincerely
Deidre Tomorrow

Dear Ms Tomorrow,

Yes, I have the request but have not acted on it yet.

I believe that this NHS mail address is safe for online discussions, but perhaps you know better.
I am reluctant to open up yet another line of communication, particularly if it is only for one patient, when I already have telephones, face to face, four email addresses, electronic hospital results, inhouse electronic notes, post from the Post Office, and post from the local hospital (not to mention my voices).

We discussed your initial suggestion at a partners’ meeting and the consensus was not to engage with your system.

I do use email quite a bit with patients, and the current system seems to work well. We are a small practice with continuity of staff, and most patients find us very accessible when compared with some other practices. We came third in the PCT for ease of access.

So, “no” is the current answer, but when I have time I will revisit that last email.

Yours sincerely
Dr Cyril Today FRCGP

Dear Dr Today,

Thank you for taking the time to respond to my email, and there is no rush about any of this. I know that you have higher priorities.

I’ve consulted with the people at Patients Know Best, and sadly I think that you are breaking the law. Sending clinical information insecurely is illegal and breaks the duties of a doctor to maintain confidentiality. NHS email is only secure when sending an email to another email address ending in NHS.net–in other words, other NHS clinicians. It provides no security when sending to non-NHS emails–that is those of patients. This is a common misunderstanding.

I don’t suppose that the risk is high as presumably the patients who consult you online are doing so willingly and are unlikely to complain–unless perhaps the information falls into the hands of others. Hospital information technology departments, which are no doubt highly risk averse, have banned sending messages to patients insecurely–even if patients sign a consent form saying they are willing to use an insecure method.

I empathise with the problem of receiving so many messages from so many sources, but I think that we are moving to a world where most messages will come in words electronically with paper disappearing and phone fading–because attempts at synchronous conversation are so inefficient. I already inhabit such a world, and I’m currently communicating with you from Alaska in the middle of the night your time.

Recognising the widespread concern about multiple accounts, Patients Know Best has integrated with NHS Mail so that patients’ messages are delivered securely to the inbox of any clinician with NHS mail. Clinicians still have to log into the web site to reply, but that is important to do so that you can see a patient’s previous conversations before replying. Systems like Outlook do not make this easy to do, leading to missed information.

Furthermore, storing patients’ online conversations inside your work inbox is poor practice as your colleagues cannot see your conversations. Perhaps you don’t do this, or perhaps you have a way of sharing such information with your colleagues. More difficult is the problem that other clinicians at other institutions who work with the same patient have no hope of seeing these messages. This means that it is the patients who are left with the burden of ferrying messages among clinical teams.

That’s why research shows that patients want a system that is friendly to them that allows them to work with all their clinical teams across all silos, including NHS and non-NHS ones. I think that it’s inevitable that more and more patients will want such systems, and it is surely better to get ahead of patients’ demands by setting up a truly patient-friendly system  Unfortunately a single practice messaging system is doctor not patient focused and is ultimately not acceptable because it means the patient must use a different web site for each institution, and the institutions never share information at the patient level.

A proactive practice should encourage all patients to adopt a patient friendly system rather than wait for multiple patients to demand different systems.

I imagine you thinking “I hope that I’m retired before this terrible world arrives,” but there is strong evidence that using online consultations can save time for both doctors and patients time. For a patient a ten-minute face-to-face appointment may well be half a day off work as well as a journey. It does mean change, and there will be inevitable snags–but they can all be overcome.
I don’t want to end by irritating you–and perhaps I already have–but in no other industry do businesses think it is acceptable to reject new technologies for working with customers. You may not like the words industry, business, and customers, but health will have to catch up.

When the steamroller comes through you either end up part of the roller or part of the road. I’m sure that you’d like to keep moving.

Yours sincerely
Deidre Tomorrow

Dear Ms Tomorrow,

You have counted my wrinkles correctly. I will be retiring next year.
Despite my partners’ negativity I have handed this project to the practice manager.

Yours sincerely
Dr Cyril Today FRCGP

I have the consent of both the patient and the doctor to publish this correspondence.

2.1  The Government’s ambition is to achieve healthcare outcomes that are among the best in the world. This can only be realised by involving patients fully in their own care, with decisions made in partnership with clinicians, rather than by clinicians alone.

2.2  Healthcare outcomes are personal to each of us. The outcomes we experience reflect the quality of our interaction with the professionals that serve us.[15] But compared to other sectors, healthcare systems are in their infancy in putting the experience of the user first, and have barely started to realise the potential of patients as joint providers of their own care and recovery. Progress has been limited in making the NHS truly patient led.[16] We intend to put that right

2.3  We want the principle of “shared decision-making” to become the norm: no decision about me without me. International evidence shows that involving patients in their care and treatment improves their health outcomes,[17] boosts their satisfaction with services received, and increases not just their knowledge and understanding of their health status but also their adherence to a chosen treatment.[18] It can also bring significant reductions in cost, as highlighted in the Wanless Report,[19] and in evidence from various programmes to improve the management of long-term conditions.[20] This is equally true of the partnership between patients and clinicians in research, where those institutions with strong participation in clinical trials tend to have better outcomes.

As the only provider of patient-controlled medical records that already integrate into the NHS existing infrastructure, we applaud the government’s leadership on this. Previous governments around the world had been lobbied by existing technology providers, and by clinical teams, who said that it is impossible to give patients control of their records. This is not true, and as the UK government has said, it is not desirable either.

Last week at the Lifepsychol quality of life conference I gave a lecture on how patient-controlled records are possible, and how they will transform health care around the world for the better.

Footnotes from the report

To my mind Cambridge based Patients Know Best is a game-changing, noise making and innovative web start-up that sets out to fix a vital yet broken aspect of our healthcare system.

When I first talking to the 4iP team, I was delighted to learn about Channel 4’s three founding pillars:

1. inspire change
2. make trouble
3. be first

These are the same values that drive us at Patients Know Best, although we had never summarized them in such a cool trio. We look forward to working with the 4iP team to continue transforming health care systems around the world for the benefit of patients.

Why has the NHS been so much slower to use information technology than other sectors and what might be done to encourage it to speed up? These were questions addressed yesterday at an NHS Confederation seminar, but we were urged to talk opportunity not barriers and to avoid answers like “change the culture and the medical curriculum” and “introduce more leadership.”

Joanne Shaw, chair of NHS Direct, began the seminar by drawing an analogy with banking. Twenty years ago you had to go into a bank to withdraw money, and you might even have had to make arrangements with your own bank to withdraw money from another bank. The bank was dominated by the manager, caught for ever for middle aged Britons by the television character Mr. Mannering, a pompous and officious fool. Shaw said she felt like a supplicant and not a customer when she visited the bank. But now millions use telephone and online banking. I haven’t been into a bank in months.

Could something similar happen with the NHS by improving the patient’s experience, raising quality, and reducing cost? Local authorities and government departments other than health (for example, Her Majesty’s Custom and Excise) have made real progress—so it is possible within the public sector.

Marlene Winfield, a patient representative, sketched a highly optimistic picture of what a digital NHS might look like in 2020. We would all have a lifelong, online, personalised medical record that we would control and share with whom we wanted. We would have access to tools for maintaining health, diagnosis, and therapy, and we would be able to consult clinicians online. Face to face encounters would still be an important part of the system, and we would be able to make appointments, arrange repeat prescriptions, access test results (with tools to help us interpret them) and undertake most transactions online. This digital future will be expected by a generation for whom information technology is not something extra to “real life” (as it is to most middle-aged people) but an integral part of it, and such a future might help “defuse the demographic time bomb,” which is due to explode any day now.

What struck me as I listened to Winfield was that the technology she described is all available now. It’s just not the way we do things in the NHS. Carl May, a professor of sociology from Newcastle, has spent more than 10 years studying the implementation of telemedicine, e-health, call it what you will into the NHS and social services, and he has observed that mostly implementation is in small, fragmented, research-led pilots and that evidence on whether the technology “works” is highly contested with people not even being able to agree what is the right kind of evidence. “The evidence is never enough,” and “the champions cannot overcome internal resistance.” So mostly it doesn’t happen. One insightful doctor said to him “If it’s telemedicine it doesn’t work. If it works we call it medicine.”

One fascinating part of the discussion was to question whether face to face consultation is necessarily better and safer than consultation by phone or online? Most of us, including me, have assumed that it is, but there’s no evidence that it is so. Clearly face to face consultation allows the reading of body language and physical examination, but many encounters with clinicians do not involve physical examination and we were all taught as medical students about the fundamental importance of the history. Many telephone or online consultations use protocols, and the questions asked have been honed over years to increase their sensitivity and specificity. Those protocols may be less likely to miss something than a harassed clinician, and then machines do not get bored, irritated, tired, and exasperated the way that human beings do.

The NHS and the Department of Health may be going slowly with moving to a multichannel NHS, but the Cabinet Office, explained Bernard Quinn of the digital delivery programme in the Cabinet Office, is keen to speed things up because it sees great opportunities for improving patient experience and satisfaction while reducing duplication and cost. A 1% shift from face to face to online or telephonic contact would save £400 million. But how to make it happen? The government’s answer seems to be a leader, and evidently Martha Lane Fox, the founder of Lastminute.com, is about to be unleashed on the Department of Health.

But there is understandably deep scepticism about another top down initiative—remember Connecting for Health? Might a better way be for the government to legislate to say that everybody’s health data should be available to them in machine readable form and that any willing provider can compete to provide services using those data?

Competing interest: RS is the chair of Patients Know Best, a start up that uses information technology to enhance the relationship between patients and clinicians.

One of the great pleasures of living in London is that a friend can email you (in this case from Salamanca) and say: “Hey, did you know Clay Shirky, a world famous internet guru, is speaking at LSE in 60 minutes?”—and you can drop everything, go, and be thrilled.

I knew about Shirky from having reviewed his book “Here Comes Everybody: How Change Happens When People Come Together” for the BJGP. His thesis is that when people are given new and easy ways to come together—through email, social networking sites, wikis, and the like—then remarkable and unexpected things happen. Through the new tools we can ascend the ladder of sharing, cooperating, and taking collective action, humbling professions, churches, and authoritarian governments as we go. It’s great stuff for us quasi-anarchists.

Sharky was in London to launch his new book “Cognitive Surplus: Creativity and Generosity in a Connected Age.” In his talk he argued that after 40 years of being largely consumers—of television, newspapers, magazines, and films—we now have the tools to use the creativity that is in all of us to have fun, produce free goods of real value, and potentially change the world.

His books are full of stories, and he began with the story of Sri Rem Sena, a Hindu fundamentalist who encouraged his followers to beat up Indian women in Bangalore who drank in pubs and lived Western style lives. Sri Rem Sena then announced that his followers would attack any woman seen in a pub on Valentine’s Day. How should women respond? It would be a brave woman who went to a pub on her own, but might there be other women who would join her? Before social networking sites it would have been hard, probably impossible, for the women to organise in time. As it was, women formed a Facebook group called “Consortium of Pub going, Loose and Forward Women” and urged members to send a pair of pink knickers to Sri Rem Sena. Through Facebook, the women could come together, express their outrage, and find a creative and funny way to get back at their persecutor. Their numbers and campaign also meant that the authorities had to act, and Sri Rem Sena and followers were arrested on 13 February.

Shirky asked himself how big the creative surplus might be, and he started by calculating that Wikipedia has taken some 100 million hours to create over 10 years. That sounds like a lot, but Shirky also calculated that Americans spend about 200 billion hours a year watching television. Wikipedia could be produced in the time that Americans spend watching advertisements in a single year. There is a lot of cognitive surplus available, and small shifts might produce wonderful things. But it may take time: Shirky pointed out that pornography appeared almost immediately after the printing press was invented, whereas it took 150 years for the first scientific journal to appear.

We might use our cognitive surplus to produce fun sites like Lolcats http://icanhascheezburger.com/, but, although lots of pictures of “cute cats” might produce pleasure, it isn’t going to change the world. Sharky, still fond of ladders, calls these “communal” sites and they are “everywhere.” Next up the ladder comes what he called “public” sites where a group of people produce a great public good for free. Only about 2% of the users of Wikipedia actually write much, but that’s enough people to produce something wonderful.

Higher still on the ladder are “civic” sites where people not only produce a valuable public good but actually change society. He quoted the example of PatientsLikeMe, http://www.patientslikeme.com/ where patients share detailed data about themselves in the hope not only that it can produce new knowledge but also that it can create social change, empowering patients relative to professionals, and help fix broken health care systems. Shirky quoted the Openness Philosophy of PatientsLike Me:

“Most healthcare websites have a Privacy Policy. Naturally, we do too. But at PatientsLikeMe, we’re more excited about our Openness Philosophy. It may sound counterintuitive, but it’s what drives our groundbreaking concept.

You see, we believe sharing your healthcare experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. New treatments become possible. Most importantly, change becomes possible. At PatientsLikeMe, we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system.”

PatientsLikeMe, by encouraging patients to share data about themselves, is trying to reverse a strong cultural tradition of keeping such information private, and, said Shirky, “I don’t know if they’ll succeed.” But he emphasized that it’s the cultural and social changes rather than the tools that really make a difference. The tools are a means to the end, and social contracts are very powerful.

He illustrated the power of social contracts by describing research conducted by two Israeli psychologists in a Haifa day care centre and published in the Journal of Legal Studies http://tinyurl.com/36keqof. The psychologists were studying the impact of fines, and in one group of day care centres they introduced a fine if parents were late in picking up their children. Counterintuitively, the number of parents picking up their children late increased compared with a control group. Presumably the parents felt released from their social contract with the teachers and thought that they could simply pay for the privilege of being late. The fines were then removed, but there were still more parents picking up their children late in the centres where the fines had been imposed. The social contract had been broken.

Inevitably, when heard this story, I thought of the consultant contract that turned a social contract where most consultants worked more hours than they were contracted to do because of their professional commitment to patients into a financial contract that led to consultants being paid more but doing less. But Shirky’s point was that social and cultural contracts can be more powerful than money. We won’t need to be paid to use our cognitive surplus for good ends.

Which makes me wonder why I’m writing this blog—and in danger of missing the start of the Spain-Portugal game? I’m not being paid, and it’s taken me about an hour—longer than usual because I’ve been searching for stuff on the web. It must be that my cognitive surplus is overflowing.

On page 25, they say:

We will put patients in charge of making decisions about their care, including control of their health records

At Patients Know Best, we wholeheartedly agree. Ours is the only patient-controlled medical records system that is already integrated into the NHS secure network. And as we mentioned before, patient-controlled medical records are the only way to go. The new government’s policy is an important continuation of the Department of Health’s interpretation earlier this year of the European Data Protection Act on patients accessing their records. We live in interesting times, and look forward to the steps the government will take to carry its policy.

This reminds of Rajiv Mehta’s description of his work on Zume Life in the PKB podcast.

It’s not particularly helpful to point out to people that why you’re not doing something if they’re simply not able to do it. And we felt that a lot of the healthcare regimens that doctors ask us to follow are at a very practical sense logistically impossible in our busy lives.

So, the goal was to develop a solution that helps people with that. And so the Zume Life solution that we developed, we developed a prototype and so forth and tested it extensively over time, it helps people do that, it gives them reminders in a very sophisticated way for anything that they consider health related that requires reminders. It helps them keep track of anything and everything that’s health related primarily from the perspective of helping them get through their day, basically reducing the hassles of life.

This question really made me pause. The answer is definitely “yes”, because each patient using Patients Know Best is able to invite anyone they want to look at their records. But when we initially designed the platform the assumption was that patients would use it with their clinicians, relatives, social workers and others who help with the patient’s health. Until the social worker brought up this question in clinic today, I had not thought about patients working together using PKB.

Of course, patients have been working together online for many years. Important efforts included the Association of Online Cancer Resources (ACOR) and more recently PatientsLikeMe arose. As Dr Wicks explained in the PKB podcast, PatientsLikeMe is a community of patients who share their entire records online because they believe that they can learn from comparing their records with those of other patients. Right now, you can see the records and photographs of hundreds of people with HIV.

Because beyond a certain degree of illness, patients worry more about the risks of not getting the right treatment than they do about the risks of losing privacy.

However, many clinicians worry about such comparisons by patients, between patients. And I paused when with the clinical team because I was not sure how best to assuage their worries.

But they should not be worried. Fundamentally, it is a good thing when patients spot variations in treatment. As my public health mentor tried hard to teach me in medical school, the only benefit in variation is if we are testing to see which variant produces better outcomes for patients. Otherwise, arbitrary variation wastes resources and delivers poor patient care.

Given that identifying variation is hard – privacy concerns make large-scale research expensive for health care systems, and time pressures make routine research difficult for clinicians – PKB becomes a useful tool for change. As patients spend time understanding each others’ care they save the time of clinicians by bringing up useful interventions from the efforts of other clinicians.

The other worry that clinicians have is that patients would demand more treatment as they learn more about what is available. But this assumption is not supported by the evidence. Dr Steve Laitner, co-chair of the long-term conditions team at NHS East of England, is fond of citing the research of Connor et al, Decision aids for people facing health treatment or screening decisions.

It is worth reading all his slides from his lecture on home health care, but briefly, his point is that when patients find out more about treatments they often decline rather than demand it.

Which brings us back to the reason we named our company: although not every patient knows best, groups of patients, working together, demonstrate a remarkable capacity to know best. At PKB, we are proud to enhance this capacity through our work.

The Abu Dhabi programme costs $15 per head, but Harrison, both a visionary and a former McKinsey consultant, thinks it can be done for as little as $1 per head using cheaper staff and different methods—so meaning that it could be feasible in some poorer countries.

MEND (Mind, Exercise, nutrition, Do it) is a community based programme for preventing and treating childhood obesity devised at Great Ormond Street that I’ve blogged about before. Paul Sacher, a cofounder of MEND, described the original programme and how they have scaled it up using software, staff in gyms rather than health professionals, and flexible business models. They have managed to reach some 30 000 in the UK, but that’s still a tiny percentage of all the overweight and obese children.

I’ve also blogged about Agita Mundo, a programme that began in Sao Paolo to encourage physical activity. Victor Matsudo, who originally was an orthopedic surgeon, began locally and through fun, branding, partnerships, and highly effective communication, including clever use of the internet, created momentum that engaged politicians, which led to changes in the environment that encouraged walking, cycling, and other forms of physical activity. Matsudo then spread the programme nationally, regionally, and eventually globally, signing up over 20 countries and about 5 millon people for a recent day of physical activity.

Discovery is a South African based insurance company that has developed a programme to pay not for treatment of sickness but to promote wellness. People in its Vitality programme all have their health status benchmarked and are then set personal goals to improve it and are rewarded—with a wide variety of rewards including plane and movie tickets—for healthy behaviour such as exercising at a gym. The more they exercise the more rewards they receive. There is also now a programme that rewards the purchase of healthy foods.

Vitality is not profitable in itself, but in order enter the programme you must purchase another Discovery product—for example, health insurance. The benefit to Discovery is that it retains people who do well on the Vitality programme, and they have lower admission rates to hospital and lower costs and shorter stays when they are admitted. These add up to substantial savings for Discovery, increasing the company’s profitability.

A fifth example comes from UnitedHealth Group, the company I work for, and was recently described in the New York Times. The programme aims to scale up an intervention to prevent diabetes shown to work more than a decade ago in a study funded by the National Institutes of Health. People with prediabetes—some 57 million people in the US, 85% of them unaware of their condition—work in groups with a trained lifestyle coach in 16 sessions to eat healthier diets, exercise more, and learn about other behavioural modifications. United has teamed up with the YMCA to implement the programme and it’s free to those enrolled in United health plans through their employers. Pilots conducted by United show that the health costs of these people can be dramatically reduced. United is also partnering with Walgrens, a pharmacist that covers the US, to improve the care of those with diabetes—again based on evidence based trials.

What do these programmes for scaling up have in common? Vision, an evidence base, tight management of data, attention to costs, clever communication, and business like methods.

Competing interest: I work for the UnitedHealth Group but was not involved in developing the programmes for preventing and treating diabetes. I have shares in the company, and if the programme does well it might raise the share price and I might benefit.

We will explore how to give citizens direct access to thedata held on them by public agencies, so that people can use and control their own personal data in their interaction withservice providers.
Labour Party Manifesto, 12 April 2010

Wherever possible, we believe that personal data should be controlled by individual citizens themselves.
Conservative Party Manifesto, 13 April 2010

The principle is particularly important as the Financial Times reports today that further sharing patient data between NHS institutions is suspended because of the privacy problems of sharing without permissions:

The chances of England ever getting a fully interchangeable electronic patient record shrank again yesterday when the Department of Health confirmed it had suspended more uploads of the national summary care record in most of the country.

The move follows protests from the British Medical Association that patients were not being given sufficient opportunity to opt out.

We built Patients Know Best to solve this problem: patients control their medical record and then share it with all their clinicians, relatives, friends and carers who help with their health. This is how citizens control their data while gaining the benefits of sharing care. And it is the reason we are signing up NHS institutions from teaching hospitals like Great Ormond Street Hospital to GP surgeries like Ramsey Health Centre: it is the only way for the NHS to share patient data.