Research talk: What is the role of informatics in cancer care?

One of the greatest delights of working in an academic environment is never knowing what fascinating research may unexpectedly cross paths with you each week. Last year I held a lunar meteorite, which will probably retain the OMG COOL award for life because how often do you get to wrap your arms around a very heavy chunk of the Moon? I will never forget how I and everyone else around me was beaming with happiness approaching rapture at being able to do so.

While not quite as exciting as a lunar meteorite, being invited to research discussions by those who are passionate about their field and how their projects can help people is equally interesting to me. On Friday I was pleased to be able to attend a research conversation with Dr. Kent Unruh, a senior fellow with the Division of Biomedical and Health Informatics at the School of Medicine here at the University of Washington.

This was a reprise of his 2008 American Medical Informatics Association (AMIA) symposium presentation earlier this month of Barriers to Organizing Information during Cancer Care: I don't know how people do it, abstract of

People organize their personal information to conceptualize what they know,
enhance information retrieval in the future, and cue or remember tasks in
everyday life. However, studies also suggest that organizing is difficult and
people fail to use their information effectively for emergent tasks. In the
health-care domain, patients face grave consequences if they cannot access and
use information effectively. Arguably, patients have access to more information
about their health than at any previous point in history. However, information
access is only the first step to managing health care needs. Patients must
organize it effectively to support the underlying tasks required to manage their
health proactively. Ironically, ever-increasing access to information
exacerbates the challenges patients face in using information effectively. In
this paper, we describe five barriers patients encounter when organizing their
information for use during cancer care. We describe each barrier using rich
examples from our triangulated data set, and conclude with four recommendations
to help patients organize information more effectively during active treatment.

I'm not too sure we followed the abstract presentation to the letter, but the implications I came away with for ways to help with information organization for cancer patients were

• Provide a rich intermediate structure (embed pre-organized links to other related information on insurance, necessary customization that is highly personalized)
• Leverage assistance from others (support co-management model, enable assistance from others & organization strategies for their particular situation)
• Provide a functional view of information (integrate descriptive & procedural info (who/what/where/when/who), distinguish information for active tasks, represent patient's view of cancer care system) Discovery of time-sensitive financial info in the stack added significantly to emotional stress, sort information/bills by date due instead of date services given.
• Incorporate emotional considerations (negative feedback loop of not being able to retrieve information when needed for patient involvement in own care)
• What is the role of informatics in cancer care? Clinicians and designers can explore stress reduction techniques, embed cognitive cues & known stress reduction techniques for stress relief in managing information

For the research study background that led to these implications & a great discussion, my notes are over here. I asked about Health Insurance Portability and Accountability Act (HIPAA) & Protected Health Information (PHI) concerns and he responded that he's currently a co-primary investigator (co-PI) on a portal for patients to manage cancer care information that involves portable workstations where clinicians enter & annotate information. I want to know much more about that although it wasn't really the focus of this particular talk, and will definitely keep an eye out for more of his findings in the future.

I also see social networking (such as Facebook pages) as a way to meet the need of being able to "coordinate in common information space between disparate groups" to help out in areas of emotional support, driving to appointments, bringing meals over, helping with childcare and other related activities in a patient's cancer treatment. I'm convinced Facebook is probably already being used this way and I just haven't seen it yet. Blogs are great for sharing cancer diagnosis, treatment and other information with everyone at once and receiving messages of support from loved ones in return but not so much for group coordination from what I've seen, which is sadly way too much.