Patients Know Best in US trial

Rebecca Todd from E-Health Insider attended my lecture at Primary Health Informatics 2012 conference, and she kindly wrote a story about our upcoming US trial.

Everyone benefits when patients are in control of their medical records. Most people think this is just a feel-good statement – and it is true, it does feel good for citizens to have such powers – but there are also concrete benefits. Quality and safety go up, while costs go down.

To prove the latter, we are part of trial in the USA to test the effects of giving patients control. The most important metric for spreading our mission is costs: we want to show that spending by payers goes down. We expect it to go down for a multitude of reasons. For example, emergency department visits may be fewer, medication errors should go down, unnecessary repetitions of blood tests will be avoided and all kinds of other inefficiencies in health care should be reduced.

Once we prove this, massive budgets will become unlocked in health care to put the patient in control. And that will feel good. The full story is available after the jump.

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Social networks enable patients to be more involved in their healthcare

My article came out in the Guardian healthcarenetwork today.

Dr Mohammad Al-Ubaydli explains how medical practitioners can make the most out of online patient-to-patient networks

Social networks enable patients to be more involved in their healthcare

Clinicians must try not to brush away a patient’s own research. Photograph: Marc Romanelli/Getty Images

There is a quiet revolution happening in the way patients and medical professionals communicate, interact and relate to each other and it’s a revolution only made possible by online social networks, new forms of social media and mobile technologies.

At the heart of this shift are online peer-to-peer support networks such as Health Unlocked and Patients Like Me which enable patients to share details of their medical conditions with people who have the same or similar conditions and compare and contrast different diagnoses and treatments – anywhere in the world. Patients can ask for advice, learn from each other, discuss test results, compare how different medications, treatments or combinations of drugs might or might not be working.

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Records in the NHS: an Achilles heel

I always rather enjoy being processed by the NHS. Instead of my usual panoramic (and perhaps highly misleading) view I’m down in the scrub. What struck me in my latest encounter was the extreme primitiveness of the records.

The medical part of the encounter was well managed. I woke with a prominent floater in my right eye (I can see it now), and I fretted that I might have a retinal detachment. I’m a high myope and have been almost waiting for my retina to detach. I set off for an eye casualty department. The “rapid assessment nurse” decided that I did need to see the ophthalmologist, the nurse practitioner dilated my pupils, and the ophthalmologist used some expensive machinery to look at every part of my retina and declared it undetached. All very satisfactory.

What was unsatisfactory was the records part of the process. For each of the two people in front of me in the queue the receptionist had to pull four sheets of paper from a rack of papers and write the name of the patient on each sheet. He then took a punch, which had the words “Do not remove” taped onto it, and punched two holes in each sheet. Next, he threaded the four sheets together with what I think is called a treasury tag. This 19th century manoeuvre was completed by him writing the name of the patient into a log book.

With one patient the process was complicated by the patient being a child. Perhaps because he’d written the name of the father where he should have written the name of the child or vice versa he had to cross out names and write in other ones—on both the paper and the log book.

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PKB on Sky News thanks to Department of Health’s Maps and Apps event

I spent a very cool morning at Sky News. Not only did they pick me up in taxi with built-in Wi-Fi, but the studio’s circular layout was space age. I noticed that the weather lady was not waving in front of a blue background, it was actually an enormous screen. I really want that screen for my home. And then I got to meet Eamonn Holmes who was really nice to me, reminding me during the interview a couple of times that I had to mention PKB’s name. I was quite nervous, clutching the iPad for support.

All of this was part of the Department of Health’s Maps and Apps competition. The competition was started by DoH at in August of 2011. They did a quiet launch but soon had loud approval from the community. Over 500 developers submitted their apps, and to their continuing surprise, thousands of comments and even more votes. People really wanted these solutions.

What I found inspiring was how many of them were already in place, used by NHS clinicians and patients. On the day of the event it was great talking to fellow innovators as they explained what differences they were making in clinicians’ work and patients’ lives. And with several of the developers, we discussed how to integrate their smartphone apps with PKB’s platform.

Three of the judges picked Patients Know Best as a favourite entry. For example, here is Julie Meyer talking about us:

And the DoH did an outstanding job of getting publicity for the event. We appeared in the BBC, Evening Standard, GuardianTelegraph, Times and others. Below is Sky News’s full article about the event.

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BBC Radio covers Patients Know Best

BBC Radio 4’s Inside Health episode today covered Patients Know Best. It was great to meet Dr Mark Porter, the presenter, along with the rest of his team. They came to interview doctors and patients at Great Ormond Street Hospital about their use of the software.

PKB’s slot starts at 16 minutes into the audio, which is available for download below or on the episode web site:

It was interesting for me to hear how Sean used the software with his medical team:

I need quite regular contact, day-to-day, because things change on a daily basis with the feeding; sometimes I need it reviewing quite urgently. So say I’ll see someone from neurology, gastric, nutrition, physios and everyone really on a weekly basis. [...] When I was younger you really had to get into contact with doctors because you would constantly be on the phone and then they wouldn’t be able to get back to you and then you’d have to try and send an e-mail to someone and they necessarily wouldn’t get that e-mail. It was just really hard to keep in touch.

Sean showed Mark how he accesses PKB on his iPhone. We often hear from teenagers that this is how they prefer to use PKB, and the web in general. Which is why we built a smartphone app API so that developers can integrate their smartphone software with PKB.

The full transcript is available after the jump.

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Integrate any smartphone app with Patients Know Best

Hospital IT Europe is first to cover our smartphone API. This means any developer of smartphone apps can integrate their software with Patients Know Best. Already, we have four different apps built by outside companies, even though we only created the API over Christmas, and we only told a few of our customers about it.

A smartphone apps API is one of the advantages of PKB being the only global provider of patient-controlled medical records. First, because we are global, developers like building software that integrates with our platform as they have a global market. Two of the apps developed are US ones, and the other two are from the UK, but all the developers know they can count on us for US HIPAA compliance; EU data protection act compliance; and UK NHS N3 integration.

Second, unlike other software providers, we do not view the data as our own – it is the patient’s. So we want all the patient to move that data to anywhere they choose, rather than forcing them to use our software. By contrast most health care software providers only let the data move between their own software products. Even Kaiser Permenante, a US health care provider who have a tremendously successful patient portal and recently released their own smartphone app, place the same restriction on their patients: the patients can only use the data with Kaiser Permanente.

Third, once you give independent developers a global market, they create applications that are tailored for each patient group. Each of the developers integrating with PKB is working with the top specialists in their field to create the best app. For example, one developer has created an app that uses the iPhone’s microphone to record the patient for speech and language therapists. The developers are total audio geeks, perfecting the algorithm each week with an ENT professor. Another developer has created an asthma app that tells the patient which medication to take based on their peak flow and their PKB personal health plan. They are working with another professor on the best user interface for monitoring compliance. And a third developer has developed one of the top headache apps on the Android store and is now integrating it into PKB to work with migraine specialists.

Finally, because we take care of the data storage, the costs of development are two orders of magnitude lower than for a traditional smartphone healthcare app. This means any clinician with an idea can quickly find a developer to bring it to life at a cost below the procurement threshold of most hospitals. This is how patient control brings innovation into the health care system.

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Transparency: the latest panacea

Opening up NHS data to all will bring jobs, economic growth, innovation, a better health service, reduced health costs, and a new age in science. That was the heady message heard by a long dinner table of the good and the great in the House of Commons last week. Most of them seemed to be competing with each other to announce the wonders that transparency will bring. But can it be true and will a few dissenters spoil the vision?

I should perhaps start by saying that I’m a zealot for transparency. We live in a world where what is not open is assumed to be corrupt, biased, or incompetent until proved otherwise. We may not like it and it may not be fair—but it’s how the world is. But the benefits of opening up data go way beyond avoiding the negative, particularly for science.

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Patients Know Best links up with howRU

E-Health Insider has an article about our new partnership with howRU. howRU was founded a couple of years by pioneers in health care informatics, including Tim Benson. The aim was to collect information about patient outcomes but in a way that was easy for patients to fill out, and scientifically useful for those trying to find out. Over time the team has demonstrated how their simple form provides as much predictive value as much larger, traditional assessment tools.

Personally, it is a real honour for me to finally work with Tim. I still remember reading two papers that he wrote for in the BMJ back in 2002. They explained why UK GPs had led the world in the use of electronic medical records, and why hospital doctors were so slow. (The answer, by the way, is incentives and scalability.) The articles came out shortly after I had finished my first year as a doctor, working in a hospital and in a GP surgery, after years of writing medical software. It beautifully answered a question that had puzzled and troubled me. Tim is regularly able to do this as a gifted teacher, and as one of the most experienced health informaticians in the UK.

In working with howRU, we hope to quickly and easily show clinicians how well their patients are doing. This is something they are desperate to know in a timely and accurate manner, but which they cannot do in rushed clinic appointments. For those who pay for care, including governments and insurance companies, this is a great way of finding out which of their patients are getting the best care. And for patients, this is an easy way to monitor their own health and share this information with their loved ones.

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When to say you are a social enterprise

My article on social enterprises appeared in the Guardian today and it covers how we use our social enterprise status in our marketing. The short answer is that we do not – we focus on the benefits that we deliver to patients and to customers.

But one big benefit we get is in recruitment. People want to join social enterprises because of their focus on social impact, and that means we get lots of high quality candidates. And we are hiring! So drop us a line if you want to help patients know best.

When to say you are a social enterprise

A social enterprise’s mission is more important than its legal structure. Play the calling card wisely, says Mohammad Al-Ubaydli

man on the moon

‘What is your job?’ asked a reporter to a cleaner working in NASA in its early days. ‘I am helping to put a man on the moon!’ replied the cleaner. Photograph: AP

There’s been much debate recently about how we as a sector should explain ourselves and whether it’s even worth mentioning that we are social enterprises at all. Should we search for an all-encompassing phrase to use or should we forget about the term ‘social enterprise’ altogether and just think of ourselves as part of the private sector? For me, both of these questions fall wide off the mark. I believe that how you use ‘social enterprise’ should depend on the objectives of your business, your market, your growth strategy and overall, whether it’s beneficial for your brand. Each entrepreneur must decide for themselves. At Patients Know Best we use our social enterprise status as a way to find and recruit great people – but we hold back on using it when we first pitch in our software to a client. So why is this?

“What is your job?” asked a reporter to a cleaner working in NASA in its early days. “I am helping to put a man on the moon!” replied the cleaner – it’s this same sense of mission and common purpose that makes social enterprises like ours so powerful at recruiting and retaining employees. At Patients Know Best, everyone on the team knows that our name is our mission. Our software puts patients in control of their medical records, so they can understand and then manage their own health care. Since we started in 2008, we have seen a considerable increase in the number and quality of candidates asking to join us because we are a social enterprise. They believe in the mission and they want to help make it happen.

However, despite using our social enterprise status to recruit, we rarely mention that we are a social enterprise to customers – indeed, when they do find out and they see that we’ve won many awards for being one they’re often pleasantly surprised. But they don’t find out from us. There are two reasons for this.

First, there’s still a lot of ambiguity in the sector about its definition and there are a plethora of different legal definitions. This can be confusing to potential clients. When working with high profile customers like Great Ormond Street HospitalUCL Hospital and Torbay Hospital, we prefer to focus the conversation on the social impact of putting patients in control of their records – not on our legal status. That’s what impresses these clients – not the fact that we are a social enterprise. Some of the competitions such as Unltd’s Big Venture Challenge recognise that social mission and social impact is more important than legal structure – and it is great to see this reflected in the winners they chose.

Second, the ambition, potential and scalability of social enterprises are often misunderstood. There’s a lack of confidence in some areas that we can be an alternative and that we can offer real competition to traditional, private sector businesses. That’s something that must change. For example, last year, Patients Know Best applied to an international competition whose organisers claimed they wanted the best, the most ambitious and the most scalable social enterprises from all over the world. The judges were impressed with our achievements – which was great – but decided not to take our application further because they thought Google Health was too much of a competitor. They were worried that we’d never be able to compete against one of the largest companies in the world – but why not? I say we can compete. In the meantime, Google has shut down its health business and we have been growing, signing up large pharma company Novartis, teaching hospital St Mark’s and patient charities as customers because our software works globally whereas Google’s product could not.

Each social entrepreneur must decide for themselves when, how and in what circumstances it is right for them to send a strong social enterprise message – and that depends on what objectives you have, what market you are servicing and where you see your business heading in the long term.

Can information technology improve healthcare?

I doubt that anybody within airlines, financial services, or manufacturing goes to meetings to debate whether information technology can improve what they do. It already has. But in healthcare we’ve grown very sceptical about information technology.

In fact information technology already has improved healthcare and much of what is done now could not be done without the technology, pointed out Patrick Carter from McKesson, one of the world’s largest logistics companies, at the Cambridge Health Network meeting in London last week. But, he continued, the industry has “overpromised and underdelivered,” destroying trust.

And nothing did more to destroy trust than Connecting for Health, which spent billions achieving very little. “It sterilised innovation for years,” said one member of the audience. Leaders in healthcare are reluctant to invest in information systems that may not deliver a financial return or may take years to do so. We remembered how five years ago the leaders of Connecting for Health were being invited to tour the world talking about the remarkable things they were doing. Now those who have survived the wreckage are invited to talk on how not to do it.

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