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!

New EU report on (ICT) Use and the Elderly: ICT can benefit seniors; though interest is high, usage is low.

The elderly can benefit considerably from new developments in ICT.  Given the aging demographic and the increasing demands on healthcare systems, ICT holds considerable promise for monitoring, educating, and implementing preventative measures to promote health. Interest in ICT is high, yet usage continues to be low among seniors.  There are many reasons for this including cost, education  or training required for use, lack o f awareness of the therapeutic or other properties of technology, and inadequate design of a technology in addressing special needs like visual and functional abilities.  If you are interested in this topic, the final report of a major study funded by the European Commission Information Society and Media:  Senior Watch 2: Assessment of the Senior Market for ICT Progress and Developments is worth a look.

Ambient Computing: convenient, but do we need to be concerned? We certainly need to understand what it is.

Ambient, pervasive, and ubiquitous computing have been seen as the key to a future where people in an almost effortless way can do incredible things by means of technology they do not perceive.Ambient computing is currently a field in strong development with many applications. It is about moving computing capabilities to constantly and seamlessly adapt configurations of technology to changing situations and needs. Key issues in ambient computing include: • Invisibility, e.g. that computing is embedded in other everyday objects • Construction, e.g. that new possibilities can be obtained by putting existing components together. • Heterogeneity, e.g. that components should function in many fundamentally different contexts and configurations. • Change, e.g. reflecting that the needs and the technologies are changing continuously. • Scalability, e.g. that solutions that work with few users and in a limited context, should also work in almost unlimited contexts. However, as articulated on the site for the Workshop in Ambient Computing in Aarhus Denmark, from a critical perspective this vision of ambient computing is problematic because it leaves the users without control and because the focus most often is on efficient and smart gadgets as such. Only in very few cases is the focus of ambient computing on systems supporting people in understanding what is going on at the level they choose, and supporting them in suggesting courses of action rather than acting automatically. There seems to be a need for a balanced view emphasizing how ambient systems need to be visible, how they can be deconstructed, how coherence can be achieved, how they can provide stability and understandability, and in particular how users can stay in control when dealing with a huge number of autonomous components. Furthermore, there is room for both deeper and broader perspectives on the consequences of ambient computing technologies. How can such technologies enhance the quality of life, in work settings, in the home, in healthcare, etc? Do ambient technologies generate specific social, psychological or cultural challenges that we have to be concerned with? Which new theoretical, conceptual, analytical, or empirical perspectives do ambient technologies create a call/need for? Do researchers in ambient computing have a specific social responsibility? Whereas some of the established critical perspectives, e.g. in participatory design, have been caught or absorbed in the mainstream and thereby lost their critical edge, ambient computing may be the new battleground for a revitalized critical agenda. We need to think about that.

Social Networking, Social Neuroscience, Aging

A June 2, 2009 article, Online, A Reason To Keep On Going, in the New York Times reported that among older people who went online last year, the number visiting social networks like Facebook and MySpace grew almost twice as fast as the overall rate of Internet use among that group, according to the media measurement company comScore.Researchers who focus on aging are now studying whether the networks can provide some of the benefits of a group of friends, while being much easier to assemble and maintain. About one-third of people 75 and older live alone. Per the article, in response to the growing number of older Americans, the National Institute on Aging is awarding at least $10 million in grants for researchers who examine social neuroscience and its effect on aging.

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."