The vision for this blog is to create a community of harmonious professionals across the care continuum who encourage each other in exploring digital media as a way to support businesses and families dealing with elder care.
Written on January 18th, 2011 by tasha
The Pew Internet and American Life project just released a report in December on the impact of the Internet on patients with cancer, and interestingly, cancer research. Drawing on statistics from their on-going studies, the Cancer 2.0 report illuminates some interesting facts:
While people still turn to professionals for diagnoses and information about treatment, they turn to peers for emotional support or a quick remedy for everyday health issues. They turn to professionals and peers about equally for tips to handle the day-to-day realities of living with the condition (core elements of quality of life).
It is the peer-to-peer connection that points the way to very new possibilities for approaching cancer care. Web 2.0, or the “social Web,” is the technology that allows any individual to publish such that anyone can read the entries and anyone can comment. It has been called the democratization of publishing and is a superb way to build community. Common platforms for this many-to-many communication medium are:
ACOR (American Association of Cancer Online Resources) is a pioneer in Web connectivity and participatory research. Since 1995, they have provided an email listserve, with over 200 “communities” for cancer patients and their caregivers to meet and support each other. This has been especially useful for persons with very rare forms of cancer as they can connect with others regardless of geographic location. Email is a ubiquitous medium, making this a very popular vehicle (90% of all adult Internet users have email). More than 1.5 million emails are exchanged on ACOR every week!
To get a glimpse of the “power of crowdsourcing,” in 2000 a community on ACOR focused on Gastrointestinal Stromal Tumor (a rare form of cancer) heard about a clinical trial for a new drug. Those in the initial trial formed a small group called The Life Raft Group and began informally exchanging information about the drug, their responses to treatment, and daily life issues related to GIST. They were publically exchanging and publishing their own information, which created a greater demand for the drug than the Phase 2 trial had anticipated. Through the Internet, however, they were able to circulate a petition and organize an appeal for an expanded trial. The CEO responded to the grassroots recruitment effort and expanded the next round of testing. Eventually the drug, Gleevec, went on to get final approval.
Fast forward now to 2011 and we have a format more like Facebook in the website PatientsLikeMe.com. Members can create a profile page. They can also connect in online fora, much like a bulletin board. Consider this the qualitative power of the process. Where this community takes off is in the sharing of quantitative data. They decided to create a shared/sharable anonymous medical record where members could record their treatments and outcomes, both in terms of side effects and their lab values.
Originally founded by persons impacted by ALS, the charter of this group is to empower patients. Certainly this is true on the personal level. But by creating a vessel online where patients can share their outcome data, PatientsLikeMe is facilitating collection of a potentially huge pool of data that can, indeed, be used by researchers to explore patterns and options that might not be as visible in the relatively small sample sizes of formal clinical trials. The website has groups for ALS, but also for cancer, epilepsy, fibromyalgia, depression, OCD, Parkinson’s, organ transplants, and myriad other conditions both common and rare. The social networking platform makes it not quite as pervasive as ACOR. And I suspect the demographics are much younger. Still, it is a glimpse into the future and what can be possible.
In the category of disruptive technologies, this approach certainly turns the “doctor knows best” ideology on its head. At the very least, it points to a way that clinicians and patients can collaborate and become partners in care as all strive in a community context to find effective treatments. Patients can initiate their own research studies by mining their shared data. Analogous developments have “e-patients” attending conferences and tweeting to their compadres about the latest medical advances. Patient-centered care can now also become patient-centered research.
What does this mean for cancer treatment and cancer research?
The Institute of Medicine, in its 2010 summary of their workshop: “A Foundation for Evidence-Driven Practice: A Rapid Learning System for Cancer Research,” quotes Susanna Fox, author of the Cancer 2.0 report, “Patients are doing the data collection that you crave, and they are ready to participate and be seen as your colleagues.”
For those with a technology bent, think of this as “Open Source medicine.”
The question at the end of Cancer 2.0 asks how can the scientific community avail themselves of this confluence of interest and technology. I wonder how we, as palliative and elder care providers, might do the same. Ideas?
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