Survey of cancer patients shows desire to plug in

Full disclosure: We’ve long been skeptical of the desire to get the public more plugged into managing their health information.

But a survey of cancer patients conducted this past winter may show a way forward for policymakers.

Our skepticism stems from the belief that, put simply, people have lives to live, and many, perhaps most, of us are inclined to put monitoring our health information pretty low on our daily “To do” list. So why, we’ve wondered since the MU Stage 2 regulations were proposed, hold doctors responsible?

All that said, for people who are actively fighting a disease, it makes sense that they should be given every chance to make use of new IT in order to be actively engaged in their own care. Moreover -- at least when it comes to cancer patients -- that subset of the population is, not surprisingly, ready to plug in.

The survey comes from Navigating Cancer, an organization “dedicated to helping cancer patients and their loved ones become more enlightened, empowered, supported and organized as they navigate their experience with cancer.”

This past winter, they surveyed 295 cancer patients, and the results are what one might expect:

  • 77 percent are interested in reading cancer education materials online from expert sources.

  • 74 percent are interested in having access to their medical records securely online.

  • 47 percent are interested in recording their symptoms and side effects during treatment in an online health journal.

  • 46 percent are interested in using an online guide to help them plan for their doctor visits.

As if to support our argument concerning general patient engagement, in a blog post discussing the findings a representative of Navigating Cancer pointed out that “this data shows that patient engagement can’t be lumped into one catchall category; there are different levels of engagement that patients are willing to participate in.”

The survey also asked patients what health IT attributes they were most interested in. The results?

  1. Access to test and lab results (88 percent)

  2. Secure messaging with their doctor and healthcare team (77 percent)

  3. Having access to their medical records securely online (74 percent)

  4. Requesting and scheduling appointments (72 percent)

  5. Requesting prescription refills (68 percent)

So what might all this mean for policymakers? To our eyes, it might mean that, rather than raise expectations across the board, a better option is to use specific, more interested subsets of the population as pilot projects, roughly speaking, to show others the ins and outs of using health IT to monitor and manage personal health information.

The chances of successfully spreading the message about patient engagement simply seem greater that way.

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