7 billion Citizen Scientists?

So, my TEDx talk has now been uploaded! 

A big Thank You to all the feedback from people around the world who have viewed my talk. I acknowledge that some might argue with the specifics of my vision, but I believe that the direction of my vision is accurate. People who have seen me speak before did say I look nervous at points during the talk. Yup, I'm human, I was nervous giving a talk to 1,200 people. In hindsight, I'd invest in working with a 'public speaking' coach prior to giving such a talk. 

Someone from Germany who watched my talk, contacted me recently. It was rewarding to hear that the ideas mentioned in my talk had inspired him to consider founding a startup in the arena of patient data.  

Who owns, accesses and profits from our health data? 

In the 21st century, the only people really thinking about the power of 'Big Data' are governments and corporations. 

Don't get me wrong, my TEDx talk is not against governments or corporations. It's about getting 7 BILLION patients on the planet to realise the VALUE and POWER of their health data, and to decide which scenario they prefer:

  1. Governments and a few corporations having all the power
  2. Governments and corporations 'sharing' the power with patients

The recent revelations about PRISM and our data is quite timely for having an open and mature dialogue about our health data? Maybe consumers aren't that bothered how many governments and corporations have access to their personal data? Watching this 30 minute talk by the CIA's CTO, Ira Hunt, even he concluded by saying we should be asking, 'What are our rights? Who owns our data?'. He mentions that by owning and using a mobile phone, we are already mobile sensor platforms, and will soon become mobile health platforms. I recently discovered the DataMap, by the Data Privacy Lab at Harvard University. If you're a patient in the USA, isn't it fascinating to see a map of the different entities that can get hold of your health data? THINK about it, this is BEFORE we start using the smartphone as the healthcare delivery platform.

7 billion citizen scientists. Merely a pipe dream?

In my talk, I mentioned   Our Health Data Cooperative and BRIDGE, two American initiatives that share many of the values of my vision.

I recently heard about a proposal to form a global alliance to build a data-sharing future for genomic data. This is exciting news, especially for those who want to discover cures for rare diseases [80% of rare diseases are caused by faulty genes] However, reading through their White Paper, I noticed this text on Page 5;

Patients need a trusted route for the altruistic sharing of personal genetic information to accelerate progress, including ways to manage privacy and consent 

I challenge the notion that patients should just donate their valuable health data for free to researchers in the name of advancing human health. What do YOU think? 

Then on Page 16, I noticed that Amazon Web Services, Google and Microsoft had been involved in one of their meetings held in Santa Cruz on Dec 20th, 2012. I'm not jumping to conclusions, but after recent events, I'm just a little bit more wary of certain US tech companies and my personal data. 

I still believe we need a new type of global data sharing organisation created by patients, run by patients and for the benefit of patients. A global patient data cooperative? In the 21st century, perhaps we need to establish the WPO (World Patient Organisation)? I searched to see if WPO already exists, it doesn't. However, I found IAPO (International Alliance of Patient Organisations). Anyone from IAPO reading this blog? 

If creating a new global patient run organisation seems impossible, perhaps a pragmatic path would be develop new health data exchange standards? For example, a group of 50,000 Diabetics in the US who have pooled their health data, would be able to pool their data with 100,000 Diabetics in India, and 100,000 Diabetics in China? Remember, I'm talking about the real-time health data that patients have captured from their bodies between visits to the doctor using their smartphones. Maybe the world isn't yet ready for 7 billion Citizen Scientists? 

A marketplace for patients to trade their health data? 

Late night discussions with a few people have led to the concept of an online marketplace in the future, where groups of patients around the world can sell 'access' to their health data? [Note. In my vision, patients will always own their health data]. Let's call it 'HDM', the Health Data Marketplace. 

When I have talked to people about the example from my talk of the patient in rural Africa who gets paid by a Western pharmaceutical company for access to their real-time health data captured by their phone, their first reaction is, 'How would the patient in rural Africa receive the payment?'. I mention M-Pesa, and explain that In sub-Saharan Africa, more people have a mobile money account than are are signed up for Facebook!

Given that we already have online patient communities centered around one or more related diseases such as Crohnology, CancerCommons, SmartPatients and RareShare, will those communities also be listing their datasets on the HDM? Who would own and run the HDM? How would ensure that the HDM was not used fraudently? How can we ensure the security and privacy of patient data? How would we verify that the data being listed is actually the data of those patients? Is the idea of a HDM even ethical? 

Just as in my talk, I acknowledge there are major barriers to any of my ideas becoming reality. Governance, regulation, standards, privacy, security and most importantly, interest. All my crazy ideas will go nowhere unless there is a critical mass of voices from around the globe.

I appreciate, I've raised more questions than answers. My vision is far off into the future, but if WE want it to happen, we have to start having the discussion NOW.

I'm really interested in your thoughts about my ideas. I invite you to leave a comment here, tweet me, or send me an email.