In today’s world when we have such great technology and people, why are we so worried about privacy and hiding the very information that can help us so very much.
I understand that there should always be a choice available to each and every one of us on whether we share our data or not. Protecting patients involved in research from harm and preserving their rights is essential to ethical research. Furthermore, in the National Academies Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule section “The Value and Importance of Health Information Privacy” stated in the subsection entitled “Patient Attitudes About Privacy in Health Research” that “ideally, there would be empirical evidence regarding the privacy value of all the specific Privacy Rule provisions that impact researchers, but there are only limited data on this topic from the consumer/patient perspective.” Yet, as everyone is aware health research is vital to the benefit of improving healthcare at both societal and personal levels. Has the pendulum has swung to far in the opposite direction, towards privacy and security? Does society need to reconsider how and why we are doing things that might be doing more harm than good in its current state. Health Information Privacy is and will continue to be an extremely important topic. For a detailed discussion on Public Health Protection and Privacy of Medical Records see the following excerpt from: Wendy E. Parmet, Public Health Protection and the Privacy of Medical Records, 16 Harvard Civil Rights-Civil Liberties Law Review 265-304 (Summer, 1981) (171 Footnotes). Further information on this is also found in the Harvard Journal of Law & Technology Volume 25, Number 1 Fall 2011, Much Ado About Data Ownership.
Below is a Ted video of John Wilbanks entitled “Let’s pool our medical data.” In it he eloquently discusses the topic of balancing both our privacy and the many benefits of opening and sharing our medical data.
Performing a medical or genomic experiment on a human requires informed consent and careful boundaries around privacy. But what if the data that results, once scrubbed of identifying marks, was released into the wild? At WeConsent.us, John Wilbanks thinks through the ethical and procedural steps to create an open, massive, mine-able database of data about health and genomics from many sources. One step: the Portable Legal Consent for Common Genomics Research (PLC-CGR), an experimental bioethics protocol that would allow any test subject to say, “Yes, once this experiment is over, you can use my data, anonymously, to answer any other questions you can think of.” Compiling piles of test results in one place, Wilbanks suggests, would turn genetic info into big data–giving researchers the potential to spot patterns that simply aren’t viewable up close.
“All too many observations lie isolated and forgotten on personal hard drives and CDs, trapped by technical, legal and cultural barriers.” – Nature, September 2009
The idea of creating a commons open framework is not a new topic. The idea of a commons as a knowledge bank, a form of communication and community, and a worldview perspective have been around for a while. Here are just a few examples of current commons or open frameworks.
However, the ideas of openness and sharing information are rarely discussed topics in healthcare. When compared to the enormity of talks, policies, classes, etc. given on HIPAA privacy and security, research patents, and competition in general. Therefore, to further expand this idea we need to adopt some of the work done on this idea from the Computer Science industry that not only embraces these ideas, concepts, and philosophies, but is pioneering and leading the charge behind the ideas surrounding big data. The Internet is one of the most amazing commons ever created. Who can imagine life without it anymore?
In Sir Tim Berners Lee Ted talk he proposes a web for open, linked data that could do for numbers what the Web did for words, pictures, video: unlock our data and reframe the way we use it together, which sounds a lot like the main theme or main philosophy from John Wilbanks talk above.
In the 1980s, scientists at CERN were asking themselves how massive, complex, collaborative projects — like the fledgling LHC — could be orchestrated and tracked. Tim Berners-Lee, then a contractor, answered by inventing the World Wide Web. This global system of hypertext documents, linked through the Internet, brought about a massive cultural shift ushered in by the new tech and content it made possible: AOL, eBay, Wikipedia, TED.com…
Berners-Lee is now director of the World Wide Web Consortium (W3C), which maintains standards for the Web and continues to refine its design. Recently he has envisioned a “Semantic Web” — an evolved version of the same system that recognizes the meaning of the information it carries. He is also a senior researcher at MIT’s Computer Science and AI Lab.
“It’s hard to overstate the impact of the global system he created. It’s almost Gutenbergian.” – Time
Here are some other related talks that follow along this similar methodology and philosophy:
- Don Tapscott: Four principles for the open world
- Thomas Goetz: It’s time to redesign medical data
- Clay Shirky: How the Internet will (one day) transform government
To bring the focus back to the healthcare industry or more specifically to healthcare informatics , Shah from the Stanford SOM, in his paper titled “Translational bioinformatics embraces big data,” reviews the latest trends and major developments in translational bioinformatics in the past year (2011-2012). His key take-home points are:
- Translational informatics is ready to revolutionize human health and healthcare using large-scale measurements on individuals.
- Data-centric approaches that compute on massive amounts of data (often called “Big Data”) to discover patterns and to make clinically relevant predictions will gain adoption.
- Research that bridges the latest multimodal measurement technologies with large amounts of electronic healthcare data is increasing; and is where new breakthroughs will occur.
Lastly, we as a group of both providers and consumers of healthcare can help implement and drive these changes to work with and improve our healthcare system. In doing so please remember to keep these principles alive in all that you do:
- Without exception, we all belong to our community, and we each have an equal stake in what happens.
- People most affected by critical decisions must be included in the process of making them.
- Sufficiency and resilience are the opposite of the folly of growth.