Data Protection Day: Addressing the challenges of globalization and technology

The ability to create, exchange, store and use information ubiquitously is dynamically changing business, social, healthcare and political landscapes worldwide, concurrently creating opportunities for economic and health benefit, as well as threats to individual privacy, national security and intellectual property rights. The challenge is how to address data protection needs without stifling innovation. A high level meeting was held by the Council of Europe and the European Commission on January 28, 2011, the 30th anniversary of the Council of Europe Convention 108, addressing the challenges of globalization and technology in the context of data protection. This post points to resources for further study of this topic.

Fixing things not broken: The long-form census

The decision of the Canadian federal government to scrap the mandatory long-form census with the voluntary national household survey is alarming, especially as it was made without adequate public consultation and as an imposed mandate on the national statistical agency.

New eHealth Platform has potential to allow Canadians manage their own healthcare.

New eHealth Platform TELUS health space has potential to allow Canadians manage their own healthcare. However, though access to personal health records (PHRs) online has the potential to revolutionize healthcare, there are some challenges to be overcome. The technical challenges are important, but workable. The human side -- education, tools and encouraging buy-in to the concept are crucial in determining whether the full potential of PHRs to revolutionize health care will be realized.

Personally Controlled Health Records (PCHRs): Excellent idea -- but understand the risks, be informed and use responsibly.

GoogleHealth and Microsoft HealthVault introduced the novel idea of a PCHR in the last two years, which allows patients to securely access, add to, and maintain, their personal health records on any computer with internet access. This was a paradigm shift – patient records are generally only accessible via specific request from the hospital or the doctor’s office where they are stored. Often, access involves a cost and only provides information specific to the request. While concerns were voiced about data accuracy of data in the records, privacy and security and possibilities of misinterpretation of the data, among other things, a few innovative hospitals and health organizations embraced the concept and offered their patients access to their records via GoogleHealth and Microsoft Vault. The idea has caught on and personally accessible health records are now being promoted via new systems that are being created to help patients manage their health. In Canada, the Sunnybrook Health Sciences Centre’s eHealth initiative has recently made a service called MyChart™ available to Sunnybrook patients. MyChart can contain personal and family health details, online appointment requests, online patient questionnaires, clinic visit notes, medication re-fill notes, test results, the official electronic patient health record, links to relevant diseases and personalized health information.

Last Monday (March 1) McGill University Health Centre launched Unani.ca, which allows anyone with Internet Access to maintain a list of personal health conditions, medications, allergies and family medical history.

This is a wonderful development. However, care must be taken to inform users not only about the benefits and the technical capabilities, but about the risks and the parameters of responsible use necessary to ensure the system is used to its maximum benefit. This cannot be stressed enough!

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EU Site eYouGuide

EU's eYouGuidehttp://ec.europa.eu/information_society/eyouguide/navigation/index_en.htm

The European Union Directorate-General for Health and Consumers has created the eYou Guide to inform consumers about their rights online. It offers advice to consumers on how they can make their web experience better and safer, explaining rights and responsibilities in a question and answer format organized within Actions (i.e. "Uploading", "Shopping Online"..) or Topics ("Protecting Privacy", "Being Informed)..). The site has an informal look and the text is easy to read and understand. In describing its mandate there is a caveat that, due to its informal nature, the information given in this website may not be fully accurate and that it does not aim at being exhaustive. Even so, this is a useful site for reference, because the internet is global and it is not always evident what one's rights and responsibilities are, particularly with regard to legal questions surrounding copyright and intellectual property. Links to official documentation are provided as "Related Links".

The site was described in a press release on May 9, 2009: "The European Commission today launched the eYouGuide, a new online tool giving practical advice on the "digital rights" consumers have under EU law. This guide, which responds to a call from the European Parliament in 2007, addresses consumer issues like the rights towards your broadband provider, shopping on the web, downloading music and protecting your personal data online and on social networking sites. Even though 48.5% of EU households have a broadband internet connection, a new Eurobarometer survey shows that a lack of confidence still holds many consumers back from online transactions. Only 12% of EU web users feel safe making transactions on the internet, while 39% of EU internet users have major doubts about safety, and 42% do not dare carry out financial transactions online. 65% of internet users in the EU do not know where to get information and advice about cross-border shopping in the EU. A third of consumers would consider buying online from another country because it is cheaper or better, but only 7% actually do so. Giving consumers clear information about their rights will increase trust and help unlock the full economic potential of Europe's single online market, worth at 106 billion Euros in revenues."