Tag Archives: health

Public Policy: The Big Opportunity For Health Record Data

A few weeks ago Colin Hansen – a politician in the governing party in British Columbia (BC) – penned an op-ed in the Vancouver Sun entitled Unlocking our data to save lives. It’s a paper both the current government and opposition should read, as it is filled with some very promising ideas.

In it, he notes that BC has one of the best collections of health data anywhere in the world and that, data mining these records could yield patterns – like longitudinal adverse affects when drugs are combined or the correlations between diseases – that could save billions as well as improve health care outcomes.

He recommends that the province find ways to share this data with researchers and academics in ways that ensure the privacy of individuals are preserved. While I agree with the idea, one thing we’ve learned in the last 5 years is that, as good as academics are, the wider public is often much better in identifying patterns in large data sets. So I think we should think bolder. Much, much bolder.

Two years ago California based Heritage Provider Network, a company that runs hospitals, launched a $3 Million predictive health contest that will reward the team who, in three years, creates the algorithm that best predicts how many days a patient will spend in a hospital in the next year. Heritage believes that armed with such an algorithm, they can create strategies to reach patients before emergencies occur and thus reduce the number of hospital stays. As they put it: “This will result in increasing the health of patients while decreasing the cost of care.”

Of course, the algorithm that Heritage acquires through this contest will be proprietary. They will own it and I can choose who to share it with. But a similar contest run by BC (or say, the VA in the United States) could create a public asset. Why would we care if others made their healthcare system more efficient, as long as we got to as well. We could create a public good, as opposed to Heritage’s private asset. More importantly, we need not offer a prize of $3 million dollars. Several contests with prizes of $10,000 would likely yield a number of exciting results. Thus for very little money with might help revolutionize BC, and possibly Canada’s and even the world’s healthcare systems. It is an exciting opportunity.

Of course, the big concern in all of this is privacy. The Globe and Mail featured an article in response to Hansen’s oped (shockingly but unsurprisingly, it failed to link back to – why do newspaper behave that way?) that focused heavily on the privacy concerns but was pretty vague about the details. At no point was a specific concern by the privacy commissioner raised or cited. For example, the article could have talked about the real concern in this space, what is called de-anonymization. This is when an analyst can take records – like health records – that have been anonymized to protect individual’s identity and use alternative sources to figure out who’s records belong to who. In the cases where this occurs it is usually only only a handful of people whose records are identified, but even such limited de-anonymization is unacceptable. You can read more on this here.

As far as I can tell, no one has de-anonymized the Heritage Health Prize data. But we can take even more precautions. I recently connected with Rob James – a local epidemiologist who is excited about how opening up anonymized health care records could save lives and money. He shared with me an approach taking by the US census bureau which is even more radical than de-anonymization. As outlined in this (highly technical) research paper by Jennifer C. Huckett and Michael D. Larsen, the approach involves creating a parallel data set that has none of the features of the original but maintains all the relationships between the data points. Since it is the relationships, not the data, that is often important a great deal of research can take place with much lower risks. As Rob points out, there is a reasonably mature academic literature on these types of privacy protecting strategies.

The simple fact is, healthcare spending in Canada is on the rise. In many provinces it will eclipse 50% of all spending in the next few years. This path is unsustainable. Spending in the US is even worse. We need to get smarter and more efficient. Data mining is perhaps the most straightforward and accessible strategy at our disposal.

So the question is this: does BC want to be a leader in healthcare research and outcomes in an area the whole world is going to be interested in? The foundation – creating a high value data set – is already in place. The unknown is if can we foster a policy infrastructure and public mandate that allows us to think and act in big ways. It would be great if government officials, the privacy commissioner and some civil liberties representatives started to dialogue to find some common ground.  The benefits to British Columbians – and potentially to a much wider population – could be enormous, both in money and, more importantly, lives, saved.

Next Generation Open Data: Personal Data Access

Background

This Monday I had the pleasure of being in Mexico City for the OECD’s High Level Meeting on e-Government. CIO’s from a number of countries were present – including Australia, Canada, the UK and Mexico (among others). But what really got me going was a presentation by Chris Vein, the Deputy United States Chief Technology Officer for Government Innovation.

In his presentation he referenced work around the Blue Button and the Green Button – both efforts I was previously familiar with. But my conversation with Chris sparked several new ideas and reminded me of just how revolutionary these initiatives are.

For those unacquainted with them, here’s a brief summary:

The Blue Button Initiative emerged out of the US Department of Veterans Affairs (VA) with a simple goal – create a big blue button on their website that would enable a logged in user to download their health records. That way they can then share those records with whoever they wish, a new doctor, a hospital, an application or even just look at it themselves. The idea has been deemed so good, so important and so popular, that it is now being championed as industry standard, something that not just the VA but all US health providers should do.

The Green Button Initiative is similar. I first read about it on ReadWriteWeb under the catchy and insightful title “Green Button” Open Data Just Created an App Market for 27M US Homes. Essentially the Green Button would enable users to download their energy consumption data from their utility. In the United States 9 utilities have already launched Green Buttons and an app ecosystem – applications that would enable people to monitor their energy use – is starting to emerge. Indeed Chris Vein talked about one app that enabled a user to see their thermostat in real time and then assess the financial and environmental implications of raising and/or lowering it. I personally see the Green Button evolving into an API that you can give others access to… but that is a detail.

Why it Matters

Colleagues like Nigel Shadbolt in the UK have talked a lot about enabling citizens to get their data out of websites like Facebook. And Google has it’s own very laudable Data Liberation Front run by great guy and werewolf expert, Brian Fitzpatrick. But what makes the Green Button and Blue Button initiatives unique and important is that they create a common industry standard for sharing consumer data. This creates incentives for third parties to develop applications and websites that can analyze this data because these applications will scale across jurisdictions. Hence the Read Write Web article’s focus on a new market. It also makes the data easy to share. Healthcare records downloaded using the blue button are easily passed on to a new doctor or a new hospital since now people can design systems to consumer these healthcare records. Most importantly, it gives the option of sharing these records so they don’t have to wait for lumbering bureaucracies.

This is a whole new type of open data. Open not to the public but to the individual to whom the data really belongs.

A Proposal

I would love to see the blue button and green button initiative spread to companies and jurisdictions outside the United States. There is no reason why for examples there cannot be Blue Buttons on Provincial Health Care website in Canada, or the UK. Nor is there any reason why provincial energy corporations like BC Hydro or Bullfrog Energy (there’s a progressive company that would get this) couldn’t implement the Green Button. Doing so would enable Canadian software developers to create applications that could use this data and help citizens and tap into the US market. Conversely, Canadian citizens could tap into applications created in the US.

The opportunity here is huge. Not only could this revolutionize citizens access to their own health and energy consumption data, it would reduce the costs of sharing health care records, which in turn could potentially create savings for the industry at large.

Action

If you are a consumer, tell your local health agency, insurer and energy utility about this.

If you are a energy utility or Ministry of Health and are interested in this – please contact me.

Either way, I hope this is interesting. I believe there is huge potential in Personal Open Data, particular around data currently held by crown corporations and in critical industries, like healthcare.

Saving Healthcare Billions: Let's fork the VA's Electronic Health Records System

Alternative title for this post: How our Government’s fear of Open Source Software is costing us Billions.

So, I’ve been meaning to blog this for several months now.

Back in November I remember coming across this great, but very short, interview in the Globe and Mail with Ken Kizer. Who, you might ask, is Ken Kizer? He’s a former Naval officer and emergency medicine physician who became the US Veteran’s Affair’s undersecretary for health in 1994.

While the list of changes he made is startling and impressive, what particularly caught my attention is that he accomplished what the Government of Ontario failed to do with $1Billion in spending: implementing an electronic medical record system that works. And, let’s be clear, it not only works, it is saving lives and controlling costs.

And while the VA has spent millions in time and energy developing that code, what is amazing is that it’s all been open sourced, so the cost of leveraging it is relatively low. Indeed, today, Ken Kizer heads up a company that implements the VA’s now open source solution – called VistA – in hospitals in the US. Consdier this extract from his interview:

You have headed a company that promoted “open-source” software for EHR, instead of a pricier proprietary system. Why do you think open source is better?

I believe the solution to health-care information technology lies in the open-source world that basically gives away the code. That is then adapted to local circumstances. With the proprietary model, you are always going back to the vendor for changes, and they decide whether to do them and how much they will cost. In Europe, open source EHR software is zooming. It’s the most widely deployed EHR system in the world, but not here.

Sometimes I wonder, do any Canadian government’s ever look at simply forking VistA and creating a Canadian version?

I wonder all the more after reading a Fortune Magazine article on the changes achieved in the VA during this period. The story is impressive, and VistA played a key role. Indeed, during Kizer’s tenure:

  • The VA saw the number of patents it treat almost doubke from 2.9 million 1996 to 5.4 million patients in 2006.
  • Customer satisfaction ratings within the VA system exceeded those of  private health care providers during many of those years.
  • All this has been achieved as the cost per patient has held steady at roughly $5,000. In contrast the rest of the US medical system saw costs rise 60 percent to $6,300.
  • And perhaps most importantly, in a time of crises the new system proved critical: while Hurricane Katrina destroyed untold numbers of cilivians (paper) healthcare records, VistA’s ensured that health records of veterans in the impacted areas could be called upon in a heartbeat.

This is a story that any Canadian province would be proud to tell its citizens. It would be fascinating to see some of the smaller provinces begin to jointly fund some e-health open source software initiatives, particularly one to create an electronic healthcare record system. Rather than relying on a single vendor with its coterie of expensive consultants, a variety of vendors, all serving the same platform could emerge, helping keep costs down.

It’s the kind of solution that seems custom built for Canada’s healthcare system. Funny how it took a US government agency to show us how to make it a reality.

How Yelp Could Help Save Millions in Health Care Costs

Okay, before I dive in, a few things.

1) Sorry for the lack of posts last week. Life’s been hectic. Between Code for America, a number of projects and a few articles I’m trying to get through, the blogging slipped. Sorry.

2) I’m presenting on Open Data and Open Government to the Canadian Parliament Access to Information, Privacy and Ethics Committee today – more on that later this week

3) I’m excited about this post

When it comes to opening up government data many of us focus on Governments: we cajole, we pressure, we try to persuade them to open up their data. It’s approach we will continue to have to take for a great deal of the data our tax dollars pay to collect and that government’s continue to not share. There is however another model.

Consider transit data. This data is sought after, intensely useful, and probably the category of data most experimented with by developers. Why is this? Because it has been standardized. Why has it been standardized. Because local government’s (responding to citizen demand) have been desperate to get their transit data integrated with Google Maps (See image).
Screen-shot-2011-01-30-at-10.45.00-PM

It turns out, to get your transit data into Google Maps, Google insists that you submit to them the transit data in a single structured format. Something that has come to be known as the General Transit Feed Specification (GTFS). The great thing about the GTFS is that it isn’t just google that can use it. Anyone can play with data converted into the GTFS. Better still, because the data structure us standardized an application someone develops, or analysis they conduct, can be ported to other cities that share their transit data in a GTFS format (like, say, my home town of Vancouver).

In short, what we have here is a powerful model both for creating open data and standardizing this data across thousands of jurisdictions.

So what does this have to do with Yelp! and Health Care Costs?

For those not in the know Yelp! is a mobile phone location based rating service. I’m particularly a fan of its restaurant locator: it will show you what is nearby and how it has been rated by other users. Handy stuff.

But think bigger.

Most cities in North America inspect restaurants for health violations. This is important stuff. Restaurants with more violations are more likely to transmit diseases and food born illnesses, give people food poisoning and god knows what else. Sadly, in most cases the results of these tests are posted in the most useless place imaginable. The local authorities website.

I’m willing to wager almost anything that the only time anyone visits a food inspection website is after they have been food poisoned. Why? Because they want to know if the jerks have already been cited.

No one checks these agencies websites before choosing a restaurant. Consequently, one of the biggest benefits of the inspection data – shifting market demand to more sanitary options – is lost. And of course, there is real evidence that shows restaurants will improve their sanitation, and people will discriminate against restaurants that get poor ratings from inspectors, when the data is conveniently available. Indeed, in the book Full Disclosure: The Perils and Promise of Transparency Fung, Graham and Weil noted that after Los Angeles required restaurants to post food inspection results, that “Researchers found significant effects in the form of revenue increases for restaurants with high grades and revenue decreases for C-graded (poorly rated) restaurants.” More importantly, the study Fung, Graham and Weil reference also suggested that making the rating system public positively impacted healthcare costs. Again, after inspection results in Los Angeles were posted on restaurant doors (not on some never visited website), the county experienced a reduction in emergency room visits, the most expensive point of contact in the system. As the study notes these were:

an 18.6 percent decline in 1998 (the first year of program operation), a 4.8 percent decline in 1999, and a 5.4 per- cent decline in 2000. This pattern was not observed in the rest of the state.

This is a stunning result.

So, now imagine that rather than just giving contributor generated reviews of restaurants Yelp! actually shared real food inspection data! Think of the impact this would have on the restaurant industry. Suddenly, everyone with a mobile phone and Yelp! (it’s free) could make an informed decision not just about the quality of a restaurant’s food, but also based on its sanitation. Think of the millions (100s of millions?) that could be saved in the United States alone.

All that needs to happen is for a simple first step, Yelp! needs approach one major city – say a New York, or a San Francisco – and work with them to develop a sensible way to share food inspection data. This is what happened with Google Maps and the GTSF, it all started with one city. Once Yelp! develops the feed, call it something generic, like the General Restaurant Inspection Data Feed (GRIDF) and tell the world you are looking for other cities to share the data in that format. If they do, you promise to include it in your platform. I’m willing to bet anything that once one major city has it, other cities will start to clamber to get their food inspection data shared in the GRIDF format. What makes it better still is that it wouldn’t just be Yelp! that could use the data. Any restaurant review website or phone app could use the data – be it Urban Spoon or the New York Times.

The opportunity here is huge. It’s also a win for everyone: Consumers, Health Insurers, Hospitals, Yelp!, Restaurant Inspection Agencies, even responsible Restaurant Owners. It would also be a huge win for Government as platform and open data. Hey Yelp. Call me if you are interested.

Conservative Senator Talks Harm Reduction

First, for those who have not seen it Maxine Davis, Executive Director of the Dr. Peter Foundation has an important op-ed in the Vancouver Sun titled Attention Ottawa: Insite is a health care service.

More intriguing Safe Games 2010 and the Keeping the Door Open Society (which, for full disclosure, I sit on the board of) are hosting a panel discussion on harm reduction. One of the speakers will be Senator Pierre Claude Nolin, who sits as a Conservative and has been deeply supportive of harm reduction strategies generally and the four pillars strategy specifically here in Vancouver.

For those in Vancouver who are interested in the event – details below. Hope to see you there.

Keeping the Door Society and SafeGames 2010

invite you to attend

Global Insite – A panel discussion and public dialogue on Vancouver’s

innovative response to the international question of What to do About Drugs?

WHEN:

Friday 19th February 2010

7.00 pm – 9.00 pm; doors open 6.30 pm

WHERE:

Japanese Language Hall

487 Alexander Street @ Jackson Street / Vancouver

SPEAKERS

  • DR. ETHAN A. NADELMANN Executive Director, Drug Policy Alliance; New York
  • SENATOR PIERRE CLAUDE NOLIN, Senate of Canada; Ottawa
  • LIZ EVANS Executive Director, Portland Hotel Society; Vancouver
  • DONALD MACPHERSON Co-founder, Canadian Drug Policy Consortium; Vancouver
  • SHARON MESSAGE Past President, Vancouver Area Network of Drug Users; Vancouver
  • TARA LYONS Executive Director, Canadian Students for Sensible Drug Policy; Canada
  • GILLIAN MAXWELL (mc) Project Director, Keeping the Door Open Society, Vancouver

Please join us to hear a panel of experts discuss the Canadian Government’s recent announcement that it will continue its efforts to close down Insite – North America’s only legal supervised injection site.  We invite you to participate in the dialogue that will follow.

Stem Cell Charter Sign & Share Rally Begins!

Why did I sign The Stem Cell Charter?

Yes, I’ve been really impressed with the launch and the associated campaign. Yes, my parents are cancer researchers and I (literally) grew up in lab. Yes, the website and videos are beautifully done. Yes, the Charter is well crafted, balancing both the opportunities created, and the rigor demanded, by science with the ethics that should guide all human endeavors. And yes, I believe in both the potential of stem cell research to create new cures and medical treatments and improvements to the quality of our lives this will foster.

But I signed the charter because at my core, I believe science to be one of the simplest, noblest, and purest pursuits available to humanity. It is the one endeavor in which, I believe, we come closest to understanding the unknowable truth about who we are, where we are, and how we got here. Stem cell research is an important part of that endeavor. The choice isn’t between banning it or not. The choice is do we conduct this research the way we should all science: openly, ethically, and in pursuit of the truth. This is what the Charter says to me.

But then, that’s just my reason. I hope you’ll have your own. If you do, I also hope be part of The Stem Cell Charter Sign & Share Rally that is running from now until Saturday. So check out the site and sign the charter! (copied below).

If you are really keen you can also:

  • Learn more about the Stem Cell Charter and stem cell research. (The side has some pretty cool content including 12 mini-videos by clicking on “Renew the World”. Trust me – the scientists are real, not actors.)
  • Digg the site
  • Post links on facebook (and become a fan of The Stem Cell Charter)
  • Tweet using the hashtag #stemcellcharter (and follow @stemcellcharter)
  • Blog about why you’ve signed the Charter and why you think others should (like I have)

The Charter:

The Stem Cell Charter maintains that stem cell science has the potential to revolutionize the practice of medicine, develop treatments for diseases and create unprecedented hope for humanity.

The Stem Cell Charter affirms that, “[e]njoyment of the highest attainable state of health is one of the fundamental rights of every human being without distinction of race, religion, political belief, economic or social condition.” – WHO, Constitution (1946)

To that end, the Stem Cell Charter upholds the following principles:

  • Responsibility to maintain the highest level of scientific quality, safety and ethical probity
  • Protection of citizens from harm and the safeguarding of the public trust and values
  • Intellectual Freedom to exchange ideas in the spirit of international collaboration
  • Transparency through the disclosure of results and of possible conflicts of interest
  • Integrity in the promotion and advancement of stem cell research and therapy for the betterment of the welfare of all human beings

Endorsing the Stem Cell Charter is a collective call to action. By signing the Charter, we commit as individuals and organizations:

  • To affirm the importance of stem cell science for humanity
  • To advance stem cell science and the principles articulated in the Charter
  • To disseminate the Stem Cell Charter
  • To lend our voice, time or other resources to advancing stem cell science as part of the Stem Cell Charter community, the Foundation or other related stem cell organizations or groups
  • The Bottled Water Debate Redux (a public policy case)

    I’m a big believer that public policy cannot be written in a vacuum. All too often people become obsessed that their issue or problem is the only problem and so design policies that address their concern while ignoring secondary effects that can be as, if not more, costly.

    This has been my point in the debate on bottled water. An outright ban might decrease the number of bottles that head to the landfill every year, but at what cost? First, if someone doesn’t buy water, I’ve suggested there is a good chance they’ll by something else… say Coke… which has many more calories and is less healthy. What are the aggregate health costs of having people drink more high-fructose corn syrup? Secondarily, if people are buying other drinks, then they aren’t really reducing the amount of waste, they are simply substituting it with other waste. We need to understand the bottled water not as strictly and environmental issue, but as a systems problem that impacts a number of areas. (Hence, why I’ve argued for any, and preferably larger, deposits on bottled water).

    When I’ve written about this is the past some people have understandably disagreed with my logic, claiming that those who buy bottled water would never (or only rarely) buy a different, higher calorie drink. Recently, however, I stumbled across this interesting article in The Telegraph. It discusses the decline consumption of bottled water in Britain. The quote I found particularly interesting was this one:

    Last year the bottled water market suffered a significant fall, as consumers – swayed by an environmental campaign and the high cost – turned away from the once fashionable drink.

    However, figures from the market research firm AC Nielsen, which tracks in detail the spending habits of tens of thousands of consumers each week, indicated that 71 per cent of the money saved was spent not on free tap water, but rather than sugary soft drinks…

    …this equates to Britons consuming an extra 1,700 tonnes of sugar and 6.8 billion calories,

    So it would appear that if we ban bottled water there is a cost – in terms of health – that we should be expected to pay as a society. Moreover, while there is some reduction in waste it is not absolute, indeed, since just over 70% of money is still spent on beverages it is quite significant. This of course is because (as I’ve been arguing) people aren’t buying the water, they are buying the convenience (something they are less willing to pay for during a recession and hence the decline). Indeed, this hypothesis has been confirmed by another British survey conducted by the University of Birmingham. Its researchers:

    …found that convenience and taste — not health — were the main motivating factors for choosing bottled water.

    “The majority of participants believed that bottled water has some health benefits, but that they were not necessarily significant or superior to the benefits provided by tap water. Convenience and taste were more influential factors for participants when deciding to buy a bottle of water”.

    So let us stop trying to scare or guilt consumers out of buying bottled water and instead focus on solutions that address both health and environmental issues. I suspect that if we increased bottle deposits significantly on all beverage containers (and made sure water containers had deposits on them) we might discover that people a) buy fewer beverages, b) will be more inclined to recycle/re-use the containers and c) don’t create an incentive to purchase sugary high-fructose beverages over water.

    Okay, barring some national emergency, I promise not to write on bottled water again for a while – it’s just that the topic makes for such a great policy case study on looking at an issue as a system versus seeing it as single issue problem.