All we need is more data, right?

Our problems in healthcare today, and those we will face tomorrow, will most likely be solved by opening up datasets, throwing them into the hands of software developers & entrepreneurs, and letting the magic unfold. That was the underlying premise in Washington, DC this week. I flew over from England, to attend the 5th Health Datapalooza.

I've wanted to attend for the last 2 years, but other things came up. I have heard many things mentioned about the event, but wanted to experience it for myself. I'm glad I did.

Catching up with the legendary,  Dave deBronkart , also known as ePatientDave! 

Catching up with the legendary, Dave deBronkart, also known as ePatientDave! 

The event is aimed at improving US healthcare, but since America is often ahead of the world in health technology, I wanted to understand what they are doing. Compared to the often austere environments of conferences back in England, the datapalooza was full of glamour & glitz. 

2,000 people were in attendance, and kudos to the the organisers for bringing all these people together. We were told that attendees had come from as far away as India & China. 

I wonder what people from 'emerging markets' like India & China would think when visiting the most powerful nation on Earth for a conference, only to find the wifi at the venue didn't work terribly well?

The opening keynotes on Day 1 were given by Dr Elliott Fisher, Karen Ignani, & Todd Park. I've been hearing great things about Todd Park for a while now, but never heard him speak in person, until now. He spoke with such energy, vigour & passion that you got the feeling he genuinely wants change. 

However, something bothered me. In the program for the event, it states how we are taking an important step towards a patient centred health system, powered by data. So, if the datapalooza was all about patients, why were there no patients on stage giving an opening keynote? We had keynotes from folks representing the medical profession, US government, and health insurance industry. From an attendee's perspective, I see this as incongruent. I'm not the only one who feels this way.

The UK's Secretary of State for Health, Jeremy Hunt also gave a keynote. Whilst I enjoyed most of his talk, I found it odd that when talking about why we should have greater transparency in healthcare, he had a slide with Joseph Stalin on it [Note: Stalin was a 20th century Soviet leader whose actions led to the deaths of millions]

Hearing Dr Atul Gawande speak was inspiring. He gets straight to the point, and shared his own practical examples. 

Once the keynotes were over, the rest of Day 1 had quite a few smaller sessions, running concurrently. Covering business, clinical care, community, research & more, these looked like they could be very interesting. However, since 3 or 4 sessions were running concurrently each time, you were forced to pick only one. I often found myself frustrated, as I liked two different sessions held at the same time. I don't enjoy it when conference organisers try to squeeze too much content into one day. 

One of the sessions I really enjoyed was, "Citizen/Patient - The Great Data Debate". Much of what was discussed was who should have access to our data, and how would the data we collect as patients be integrated with the data the system holds on us. There seems to be much uncertainty regarding the flood of patient generated data coming over the next few years. How will we ensure it's accurate? Who will own it? Who should develop standards? Government or industry? Do we even need more data? How can we trust those that hold our data for us? An executive at the VA recently stated that "patient generated data is going to be the thing that really transforms healthcare".

I was not able to attend the keynotes on Day 2, but one of the best quotes I found on the Twitter stream was from Adriana Lukas, founder of Quantified Self London. 

I did manage to attend one of the last sessions on Day 2, "Introducing OpenFDA". A new initiative, aimed at making it easier & faster to access public datasets from the FDA. They are starting off with all the adverse drug event reports from 2004-2013. It's still in beta, the idea is to get entrepreneurs to build new tools & services using the OpenFDA API. Since I have worked in drug safety myself, I understand the potential value of new insights that may be gained by using these existing data in novel ways. Definitely worth keep an eye on how OpenFDA develops.

More data, fewer problems?

I know from my own practical experience that can data can be used to improve decision making. The smart use of data is only a good thing for everyone in health & social care. However, we often run before we can walk. I observe many healthcare organisations with "Big Data" on the strategic agenda. What's ironic is that these organisations often don't leverage the data they already have. I'll never forget a client I worked with many years ago. As a marketing manager, she wanted the agency I worked for to build her a brand new marketing database, complete with integrated predictive analytics (i.e. the ability to find those customers most likely to respond to a marketing campaign). I suspect, she'd been influenced by a white paper she'd read. 

I pushed back, and challenged her. I knew that she didn't even know the basics about her customers. At that moment, I believed all she and her team needed were a few basic charts in Excel. I convinced my management & the client not to sign off on the huge expensive database project. I turned out to be right, one day's work to analyse the existing database by myself to produce 3 basic charts for my client, generated new insights to keep her & her team busy for a month. Less really can be more. 

What would Abraham Lincoln say about the rights of patients to own their health data?

What would Abraham Lincoln say about the rights of patients to own their health data?

In the future, as more data about our health is collected, stored & shared, privacy & security will become even more important. Yet, not one keynote at Health Datapalooza with a focus on privacy & security. How can we make informed choices, when our leaders are shouting about the benefits, whilst being silent about the risks? It's healthy to consider the dark side of all these data being collected about our health. 

Consider the keynote on Day 2, by Dr Francis Collins, Director of NIH who cited Global Alliance for Genomics & Health during his talk. Sharing our genomic and clinical data to help advance science and medicine, that's admirable, right? Let's dig beneath the surface.

As I wrote in a post last year, the global alliance met with Google, Microsoft & Amazon Web Services at the end of 2012. Read the 4th paragraph on Page 16 of their white paper that was published 12 months ago. In a healthcare system that's powered by data, ask yourself, who stands to gain the most from collecting, storing & sharing genomic data on each of us? 

The other thing I noticed during the event was the focus on data in healthcare, with little reference to social care. Oh wait, there was an app demo by a firm called Purple Binder, which uses web applications to help people find community health services. Brilliant, but not every American uses the internet or email. 

Pew Research Center's report from April 2014, when looking at seniors, found that 41% do not use the internet at all, 53% do not have broadband access at home, and 23% do not use cell phones. In a thought provoking blog post this week, Victor Wang, reminds that that Dementia care costs 5 times more than Global Warming. 

What do people living with Dementia need? The ability to download their own data or someone to care for them? Given our finite resources, what's a better use of our money? Building a new data platform or recruiting more nurses?

In the 21st century, do we want health & social care systems powered by data, or by people?

[Disclosure: I have no commercial ties with any of the individuals or companies mentioned above]

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The leading healthcare organisation of 2025 will be..?

Google, Apple, Samsung or perhaps the government? Actually, it's likely to be the organisation that manages to collect the most accurate, complete and representative data about our health. That organisation may not even exist yet.

That's right, your data, our collective data, is likely to make other people very rich & powerful over the next decade.

A couple of days ago, I was in Dublin for the Health XL Global Gathering, which attracted Digital Health innovators from around the globe. Three moonshots were announced, one of which was the use of Big Data to improve life expectancy. Bill Taranto, President of Merck Global Health Innovation Fund spelled out how they view our health data. Now, he was talking in the context of investing in startups that can build useful tools & services using our health data.

I don't have any issue with organisations wishing to profit from our health data. After all, we need incentives to spur new ideas, products and services that could solve the challenges ahead of us. Wherever I go in the world, I hear panel discussions about the need for "Big Data" to help patients, and the immense benefits that will arise from capturing, storing and using these data.

To the masses, it sounds like a no brainer, it's utopia, just tell me where to sign up. Unfortunately, that's not true. The conversation lacks balance. Despite regulators weighing up the risks vs benefits of any new drug prior to approval, Big Data seems to be lots of benefit, with minimal or no risk, according to conferences and media headlines.

That is completely inaccurate. There are massive risks on this journey, and we don't hear enough about these risks. Society needs to have a balanced conversation about our health data, not just a few people in conferences or academics in scientific journals. The data that we collect every day in the future on our health WILL at some point become MORE valuable than the data collected about our health when we visit the doctor. What I also find sad is that these panels are discussing how Big Data can help patients, but there patients are nearly always absent from the panel. Come on conference organisers, give attendees a chance to hear the voice of patients from the local community, even if what patients say upsets your corporate sponsors. I understand the situation. Writing the phrase, "patient centred care", is easy. Living those words is another thing altogether.

Many equate the value of our health data with the value of our financial data. Again, that's wrong. It's not the same.

Those that know me well, have heard my passion for moving to a world where patients own and control their own health data. I've written and spoken about my vision of the future many times already. What gave me hope this week, was the news from Samsung at their Voice of the Body event, that their new platform will do exactly what I've been campaigning for. This is brilliant news, and Samsung are blazing a trail here. I wonder if Apple & Google will follow their lead?

Muki & John from Intel Labs. Awesome people!

Muki & John from Intel Labs. Awesome people!

Now, I'm here in Washington, DC today for the Health Datapalooza event, where 2,000 people come together and exchange ideas on how data can be used to improve human health. Many of the leading thinkers & doers from around the globe will be here over the next few days, and I really hope that the conversations that take place are more balanced than in previous years at these types of events.

Well, I was blown away by the pre-conference workshop I attended today, hosted by Intel Labs and We The Data. An interactive workshop that tackled many questions ignored or glossed over, such as data literacy, and trust in the organisations that collect data on us. It was an extremely valuable experience.

After the workshop, I had to meet a friend outside the White House. I was running late, and asked the taxi driver with such vigour to take me to there immediately, he wondered if I actually had a meeting there! When I reached there, I was compelled to send a message to the American people.

As an aside, it's exactly 2 years since my last day at GSK, where I spent almost a decade analysing the largest patient databases from the US & Europe. As an entrepreneur, It's been a spectacular and often frightening rollercoaster ride, working under my own steam. Having the freedom to express myself has been the single biggest benefit. I appreciate that not everyone has the circumstances to quit a permanent job and walk into the unknown. It highlights to me the importance of imagination. Many organisations tell me they have limited, or no budget for innovation. I remind them, that they have a limitless resource, often untapped, the imagination of the people that work there. Can you imagine your organization behaving in a different way?

What now?

So, the next time you hear any organisation on the planet say they want to collect more data on us in order to improve health & social care, don't forget to ask them who exactly will own, control & profit from that data. Keep asking until you get an answer. Unfortunately, governments & corporations tend to listen to the masses, only when they start screaming & shouting.

Or maybe ask them why they want to collect even more data when they haven't fully leveraged the data they already have? Ask who stands to benefit the most from the new initiative? Is it always the patient, or it is another group of people?

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Maybe the leading healthcare organization in 2025 will be the one that genuinely operates with transparency, trust & integrity? Or maybe we shouldn't dream of a better world, and just accept that corporations & governments will sometimes put their own interests above those of the public good?

Do we need a World Data Organization that ensures we our digital data rights are protected just as our basic human rights are protected? What do you think? There is nothing to stop us from establishing a dialogue that enables every stakeholder in health data to ensure we do the right thing, the right way, at the right time.

[Disclosure: I have no commercial ties with any of the companies mentioned]

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