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.

Fascinating to hear Mr Taranto from Merck state that he sees health data as currency, as money #hxlgg pic.twitter.com/o8JJFyhMO6
— Maneesh Juneja (@ManeeshJuneja) May 30, 2014

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.

@ManeeshJuneja @DocComLtd The corollary question is: who ensures patient-generated data is used in patients' best interest? #HITsm #s4pm
— Matthew Katz (@subatomicdoc) May 31, 2014

I wish all apps had a simple upfront message saying what they will do with my data and broadly how they make their money. #informedchoice
— Roz Davies (@roz_davies) May 29, 2014

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

"On black market, electronic health records can be worth 20 times as much as stolen credit card data" http://t.co/FWGGfudwP7 @ManeeshJuneja
— Daphne Zohar (@daphnezohar) May 31, 2014

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?

It appears that Samsung will allow users to own (and control) their health data with their new platform? #VOTB @dnatimes @johnchavens @tyrgr
— Maneesh Juneja (@ManeeshJuneja) May 28, 2014

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?

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]