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.

Making the C list, Google Health & advertising

As a followup to last week's post about not making the HMO C list regarding Web 2.0 mentions, I actually did beginning the next day according to my statistics. My guess is it's due to linking directly to the source article. Hello out there! :)

It is with this experience in mind regarding health information on the web that I'm mulling over the recent public debut of Google Health, an online electronic health record (EHR) that is owned by the person who creates it but has import capability from the electronic medical records (EMRs) of healthcare and other organizations that have partnered with them.

This sounded great to me, until I dug around to find out exactly who these partners are

Google Health Partners: About our partners

Google Health is an open platform. We publish our technical documentation and anyone who wants to integrate or partner with us can do so. We don’t work exclusively with any organization or company. We partner with doctors, hospitals, medical clinics and groups, retail pharmacies, health insurance plans, laboratories, pharmacy benefit managers (PBMs), and interesting companies that offer personalized online health tools to our users.

"Interesting companies that offer personalized online health tools" sounds suspiciously vague to me. Seeking more information about just how the partnerships work, I checked out the developer policies in place for them. Under the Data Use section is

Only use Google Health user data for the purposes disclosed in your privacy policy, and obtain users' opt-in consent if personally identifiable health data will be used for ad targeting.

Clearly label advertising

and in Notices is

• Promotional* notices must be clearly labeled as promotional
• Promotional notices may be sent a maximum of once per week per user
• Links in notices must open in a new window or provide a working back button

* Definition of promotional: Promotional materials are any materials that promote a product or service - such as encouraging the user to purchase or "ask their doctor" about a specific item. This includes coupons and sale announcements, as well as drug advertisements.

Contrast this to Frequently Asked Question (FAQ) #6

6. If it’s free, how does Google make money off Google Health?

Much like other Google products we offer, Google Health is free to anyone who uses it. There are no ads in Google Health. Our primary focus is providing a good user experience and meeting our users' needs.

So, as I understand it, Google Health itself will not have advertising as part of its basic platform. If users opt in to use third-party applications as part of their Google Health records, then there could be advertising generated from them.

This fact is not currently stated anywhere in the FAQ or the general user information that I can locate, but there is You can also use Google Health to access a host of online services and tools, from a variety of third-party companies, that can help you better manage your care. in FAQ #3 that states outside applications are possible to integrate in your Google Health record.

I'm concerned about this, especially regarding user populations with low web and/or health literacy who may 'keep clicking' to access applications without reading the terms of service or understanding the consequences of sharing their personal health information with them.

I have not signed up for my own account as I'm satisfied with my access to my HMO's EMR (got that down as a positive mention, guys?) that is protected under HIPAA and prefer to keep my health information that way.