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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Big Venture Challenge winners: Patients Know Best

The Guardian has an article today about Patients Know Best as one of the 25 winners of the Big Venture Challenge. It was a real honour to be included in this list, plus it meant a £25,000 prize and benefiting from the mentoring and network of Unltd and the Lottery Fund.

Over the next couple of months, the matched funding component is allowing us to raise money from social investors, scaling up the company while keeping our focus on patients. The new investors join our existing world class investors, including Esther Dyson (one of the top health IT angel investors in the world), Channel 4 (one of the UK’s largest TV stations) and Seedcamp (Europe’s top seed fund).

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Why I invested in Blueprint Health

I recently invested in and became a mentor for Blueprint Health, which is a program in NYC that helps very early stage health technology companies get started. The founders have been really interesting to work with over the last couple of months and so I wanted to share what I learned, and to encourage others to join Blueprint.

Brad and Mathew contacted me over the summer inviting me to become a mentor. I spoke to them, liked them, and agreed to join. They then gave me a login as a mentor and I was amazed at the tool they had built for identifying, targeting and recruiting mentors. I could see that they had targeted me a while back and eventually gotten an introduction to me through a friend. They were quite systematic, and they had built a great network of mentors which I am quite proud to join.

I then asked about investing, because I had been looking for a healthcare-focused seed fund. Winning Seedcamp back in 2009 was amazing, and we got so much support from being part of Europe’s top seed fund. The one thing I wished I had had was health care mentors, as Seedcamp does not focus on any one industry. (It is quite an education learning with founders from so many different sectors.) And the one thing I knew when founding Patients Know Best was how much health care needed start-ups to deliver innovation to patients and professionals.

Interviewing Brad and Mathew’s references was fun. There were lots of people who thought these two were amazing people, but what struck me was how – even when extremely busy with their own start-ups – each of them spent time mentoring others. This is really the spirit on which Blueprint is built.

Finally, I was pleased that they had set up the seed fund in New York City. A lot of press attention is focused on Silicon Valley, a truly wonderful place for web 2.0 start-ups, and a completely irrelevant one for health care. London, Boston, the Midwest, and NYC are where health care innovators cluster, and where their innovations are adopted into medical practice for global distribution. Brad and Mathew had started in a great location and had access to a great pool of entrepreneurs.

So, if you are thinking of creating a health care start-up, I highly recommend you speak to them. And of course, as a mentor and investor, I would be delighted to do my part and speak to you as well. Drop me a line on mohammad@patientsknowbest.com and I look forward to learning about your innovations.

About Blueprint Health

A charter member of the TechStars Network, Blueprint Health is a mentorship-driven startup accelerator based in NYC that helps first-time and experienced entrepreneurs seeking to build innovative companies at the intersection of health and technology. We provide teams with $20,000, office space and mentorship for 3 months. The program begins January 9 and we are now accepting applications. If you are interested in getting involved or applying go to www.blueprinthealth.org.

Great Ormond Street hospital transfers patient’s records using ‘medical Facebook’

The Guardian has written about the first transfer of medical records between two hospitals using Patients Know Best.

A young lady, coming up to her 18th birthday, was able to do the transfer by granting her new specialist team access to her old pediatric medical records. The two hospitals – Great Ormond Street Hospital and St Mark’s Hospital – are both in London, but from completely different NHS Trusts. Rather than having to wait for integration between the two hospitals’ computers systems – something that may never come given the failure of the National Program for IT – the transfer of data could happen instantly because the patient is in control.

This story is particularly meaningful to me because I remember my own transfer to adult care as an 18-year old. I was a sulky teenager, especially about my illness. Moving from a pediatric ward to an adult one full of much older and much sicker strangers was stressful despite the best attempts of the wonderful doctors and nurses looking after me. I hope that this Great Ormond Street Hospital patient and others have an easier time thanks to controlling their records.

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Novartis trials Patients Know Best

E-Health Insider is covering our clinical trial with our newest customer, Novartis. This should be the first of many clinical trials that PKB makes possible. In this case, the aim of the study is to better understand what life is like for a patient with COPD, a long-term lung condition.

There are two advantages to using PKB for research. First, our privacy controls make it technically and ethically easy to collect data from patients for research, without giving away the identity of the patients. The protection means that patients are happy taking part in research trials. This in turn makes it faster to get ethics approval.

Second, we can capture more data more accurately than in the normal methods of traditional research trials. This is because patients use PKB to get care from their clinicians. So the data analyzed are actual care data, rather than a parallel, research-only data set. The data used are thus more comprehensive and more accurate than with other methods.

If you are an academic researcher, or work at a pharmaceutical company, contact the PKB team so we can help with your research efforts.

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Patients Know Best sponsors Women in the City’s Women of Achievement Award

It is with great pleasure that we sponsor Women in the City’s Women of Achievement Award. This year the award has a new Medical category, so it is an honour to be their first sponsor. Nazzarena Arman interviewed Gwen Rhys, founder of the awards, so she could you hear her tell the story of the awards.

The full transcript is after the jump. And of course, if you are considering a career with Patients Know Best, we would love to hear from you.

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Skype service expands in south Devon

E-health Insider has an article about NHS South Devon’s usage of Skype inside Patients Know Best. Fiona Barr, the journalist, kindly interviewed me after NHS medical director Sir Bruce Keogh said he wanted to give doctors’ incentives to carry out online consultations.

NHS South Devon had been using Skype for online consultations for a while. Like so many of our customers, they are early adopters of using new technology to improve patient care. When they signed up we integrated Skype video calls so that it would fit into clinical workflow. The lack of integration is what drove so many early criticisms of Sir Bruce’s recommendation of Skype, but with the integration clinicians can comply with their legal requirements for record storage while patients get high quality care without needing to travel.

NHS South Devon patients can register to use PKB with their clinical teams through our customers page:

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