For many years the open source (shareware, freeware) movement has flourished. Linux is considered, “one of the most prominent examples of free and open source software collaboration”. Repositories such as www.shareware.com and www.tucows.com provide a centralized distribution method for individual programmers to increase the reach of their product.
The open access movement in academia is another means by which traditional distribution channels (e.g. publishing companies) can be circumvented. By inverting the payer/payee relationship scholarly journal articles were made available for free to anyone on web sites. Authors paid a fee to have the article published so that subscriptions to journals were no longer necessary.
There has also been a movement to make data more freely available . Governments are sharing data they collect and requesting data yielded from research it has funded be accessible . Providing access to information collected by the government free for analysis increases transparency. Open data has also been suggested by the scientific community. Researchers should include raw data so that secondary analysis can be conducted. This also provides an excellent way to teach students statistics: use the data set provided to replicate the published findings.
One of the most exciting outcomes of this has been data journalism. In 2009 the UK Guardian’s journalists used data provided by the CDC, entered into the openly available Google Docs spreadsheet then mined it in conjunction with open source mapping software to create real-time coverage of the H1N1 pandemic. Various patient populations have been also been collaborating online, pooling their knowledge and resources. One in particular, www.patientslikeme.com has been sharing data such as lab results and other self reported measures of symptoms and treatments. Recently they used this data to refute a study published in peer-review journal.
Thus far both the open source and open access movements have co-existed with their profit-oriented counterparts with minimal disruption. Microsoft still profits from selling copies of Windows as Apple does from its operating system Leonard. Many journals have web-based versions in which articles must be individually purchased or accessed through an institutional subscription.
Open data has much deeper potential to disrupt the status quo. It has the ability to challenge “truth”. This is raw data. In this context data (and knowledge) is more about power, not just about money. And people are starting to notice. The first blow to open data was the threat of reduced funding for the US-based data.gov. Now I’m concerned that it will be the patient data stored in EHR or electronic health records managed by Canada Health Infoway. In this article, “Electronic health records raise privacy concerns” the British Columbia Civil Liberties Association reveals that, “It takes that health information out of the hands of the patient and the practitioner and puts it into the control of government. That’s exactly what the Canada Health Infoway is doing.”
Patients need to read the fine print before they enter or share their data. They need to understand the importance of ownership and access. This is agency at its purest and simplest form. Yes, be an empowered patient. Go online, search for anecdotal or experiential information and seek help from your peers. But don’t let go of your data and your ability to aggregate it with others. It is probably the most important of all the open movements.