It was 1996. Most of the world was dancing the "Macarena" and Mark Zukerberg, the 24-year-old billionaire behind Facebook, was still two years away from puberty. Long before the term “social networking” was even in use, and long before people were electrified over the panoply of services offered by web 2.0., Gilles Frydman created ACOR.org, a non-profit organization using the Internet to maximize access to quality care and support for anyone affected by cancer.
Frydman’s wife Monica had recently been diagnosed with ductal carcinoma in situ, a form of breast cancer. The doctor swiftly recommended a removal of the breast and lymph nodes followed-up by prophylactic chemotherapy, without providing many details or an alternative option. Within a few hours of the diagnosis, internet savvy Frydman joined a breast cancer list-serve, which at the time was a compilation of a few lists coming from different academic institutions. He posted his wife’s doctor’s recommendations on the web, and within hours, based on the numerous responses he received, Frydman determined that the doctor had likely suggested an unnecessarily invasive treatment.
Frydman and his wife sought a second opinion from a doctor at Sloan Kettering who confirmed what Frydman’s on-line exchanges had revealed. A mastectomy and chemotherapy were unnecessary, as a lumpectomy and radiation proved instead to be the successful remedy. Throughout Monica’s treatment, Frydman continued reading and joining lists full of valuable information that he perceived as having one major flaw; they were not archived and so all of the information eventually vanished into cyberspace. Frydman began to develop ways of making content permanent and searchable so that patients and caregivers could read and contribute to the conversations. The result was ACOR, a collection of online communities which has since blossomed into a compendium of 159 mailing lists providing support and information to sufferers of cancer and related disorders. Over 1.5 million individual emails are sent by ACOR on a weekly basis to people across the globe.
The web site’s layout is surprisingly simple and refreshingly void of advertisements. Users can search types of cancer alphabetically or by region of the body, then subscribe to pertinent lists. There is also the option to choose by topic, as various aspects beyond diagnosis and treatment are discussed on the site. Lists detailing side effects, ways to find counseling and participate in advocacy events are all listed on the site. Religious and psychological resources for grieving family members and caregivers are all also available and can be freely subscribed to.
While health care professionals figure among the contributors, most users are educated and inquisitive patients with healthy sense of skepticism that they qualify with by doing their own research. The ACOR sponsored e-patients blog located at www.e-patients.net/, provides countless examples of how patients, by using “Dr. Google” have saved themselves from disastrously inaccurate diagnoses.
The logic working behind ACOR and its affiliated sites is not to undermine the healthcare system, but to serve as an extra resource that helps to make it stronger. A study in the Journal of the American Medical Association conducted in 2000 reported that after cancer and heart disease, medical errors are the third leading cause of death in the U.S. Such evidence provides a compelling argument for sites such as ACOR because the nature of their fluid exchanges and the quantity of the information they catalogue provide sound deterrents to medical misfortunes.
“The patients end up knowing more than the doctors,” said Frydman in an interview, “although knowledge is not always welcome.”
In the U.S., as a result of ACOR and affiliated sites, an increasing number of doctors are being met with well-informed patients and ACOR’s success also provides insight into the Personal Health Record (PHR) debate. Security, privacy issues, liability, and what an article in a May 26th edition of Information Week calls, “the annoying questions that inevitably come from patients combing their records,” appear to be the major deterrents to PHR’s, aside from lethargic doctors who prefer to transfer records via fax, further compromising their likely already illegible writing.
However, a March 2006 article in the Journal of the American Medical Informatics Association maintains that while “the lack of a proven business case for widespread deployment hinders PHR adoption… Personal health record systems are more than just static repositories for patient data; they combine data, knowledge, and software tools, which help patients to become active participants in their own care.”
Evidence to prove the later is abundant. By using ACOR, which is a compilation of everything but personal health records, many patients have already managed to catch errors and avoid incorrect or unnecessary treatments. And even evidence for the PHR’s viability as a business model is not improbable. Microsoft beat Google to the punch by launching Health Vault, and other sites such as Ihealthrecord and Healthrecordsonline are already capitalizing on the convenience of giving users readily accessible health records. They are especially fond of touting the added benefits of E-records during foreign travel and emergencies.
Like almost every other new technology operating system, there is a fair amount of skepticism surrounding the idea of online health records, especially in terms of privacy and security. A time can easily be recalled when people were weary of online shopping, which has since turned into an industry that can easily do over $700 million in sales a day. People began to enjoy reading customer reviews on Amazon, to educate themselves by comparing prices on BizRate, to set their own limits by bidding on Ebay, and after mastering a few clicks, were ready to sign up for the Speedy Checkout.
“Communications tools don’t get socially interesting until they get technologically boring,” says Clay Shirky, a media technology specialist and author of “Here Comes Everybody: The Power of Organizing without Organizations.”
With the example set by ACOR, it should only be a matter of time before online health records become banal.