Participatory Research

Well, I went through all 202 pages of the survey questionnaires 🙂  They have progressed nicely with more and more refining questions around technology over the decade.  I can certainly see the next questionnaire drilling down to discern more about e-patient behaviours.

I think I was able to get an idea of what could be added based on the following:

1)  Healthcare search behaviour questions – These questions focus on what the driver was for searching online for healthcare information beyond what you have already described in the questionnaires.  Such as, did a personal medical diagnosis prompt you to begin to search online for answers?  Was it your diagnosis?  A family member’s?  In my experience, many of the ladies I have spoken with didn’t even think about doing an online search for breast cancer until it became medically necessary (i.e. they were diagnosed with something).  Did the prompt to search online come when conventional methods for answers failed (I.e. Going to a doctor and looking for answers)?  Was the diagnosis expected/unexpected?  Part of a general check-up?   Prompted by symptoms?  The ladies in my group each exhibited a different type of online behaviour based on whether they had symptoms/no symptoms, knew that had breast cancer, were in the process of being diagnosed or if they were completely surprised by the diagnosis.  I hope this makes sense.

Also, if they had children/other family members who were wired, the women tended to be more apt to connect and explore as well as use more online tools to seek out information.  I liken this to the digital family support network/caregiver phenomenon.

Lastly, I would ask the respondents questions about whether they were compiling or perhaps have compiled their own personal health record in an effort to proactively manage their health/their condition, etc.  Was this activity prompted by a diagnosis?  Without a diagnosis?  Is this behaviour related to more computer competence or is that an insignificant characteristic?  That is, what traits drives someone to build their own personal medical record?

2) Computer competency/literacy – Additional questions would focus on that sub-group of users who may not have been born with an *iPad in their hands* or had taken *computers in school* but they may have taken some computer course for recreation or have been taught some skills by a family member (perhaps the child noted above).  I guess what we are looking at here is the exposure element and the comfort level with computers, mobile devices, apps, etc.  Did the respondent learn about computers later in life?  On their own by trial and error (I.e. Self-taught)?  Through a recreation course? Or not at all?

You cover mobile in the last two questionnaires but I would add some questions around searching app stores in general, searching app stores for healthcare/mobile apps as well as questions on downloading mobile health apps.  I would add a listing of the sub-categories of mobile health apps (consumer health apps for monitoring, reading, guidelines, training, etc.) to understand who is downloading and what they are downloading (and to what device).   You have the distinction between home and work online search use in the questions, but I would add other options such as vacation, on the bus, church, coffee shop (not necessarily an internet café), etc.  I know that may sound silly but I have seen it happen!  People search/surf in the strangest places!  Also, what types of devices do they most comfortably use to do these online searches?  iPad? iPhone? Desktop?  Playbook? Android?

3) Social media behaviour – You cover this in a few questions in the last two questionnaires but I would expand to include things such as Did you friend a complete stranger on Facebook because you saw that they had breast cancer (in profile description or perhaps in a post)?  Did you ask one of your friends on Facebook to connect you with one of their friends because you knew they had breast cancer?  Of course, you can replace Facebook with any social media tool (I.e. Twitter, Pinterest, etc.).  What we are trying to ascertain here is if they moved from passive searching or passive review of material online (whether on a website or in a user group, etc.) to actively searching out people with like/similar conditions.  Could also be sites like PatientsLikeMe, etc.  Many of the ladies would never have made those connections with me at all (even by email or phone) if the contact did not come *friend pre-approved* (or least have the appearance of that).

Lastly, it is simply updating the tools and apps identified in your questionnaire to circa 2012. You could add browsers such as Firefox, Safari, Mozilla, Opera, etc.  Maybe add 3G, 4G options for networks (we all know how quickly we get frustrated with search when the network sucks).  Mobiles devices such as BB, iPad, iPhone, Playbook, etc. and OS’s such as iOS, Android, Blackberry OS.  This last point could be overkill but it would certainly show the healthcare industry where the consumer is going and perhaps even why (I.e. Usability, network performance, device performance, etc. ).  Many of the ladies I work with each have differing tools and like different browsers etc.  This has a huge impact on not only what they find online but how they find it.

I hope this all makes sense Susannah!

If a t-con makes more sense, I would be more than happy to chat.

Keep me posted on when the new questionnaire goes out – I would love to see how it goes!

Sincerely,

Carrie

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This is just one example of many acts of generosity I’ve experienced in being part of what I call the “health geek tribe.”

Bottom line: It’s an honor to receive this level of peer review from an expert like Carrie Handley.

For further inspiration, please see:

What I’ve Learned as an Academic Blogger, by Jason Hepler (my favorite points: Twitter and blogs are as valuable as conferences. Your digital presence generates real relationships.)

New Science Papers Prove NASA Failed Big Time In Promoting Supposedly Earth-Shaking Discovery That Wasn’t, by Matthew Herper (my summary: formal peer review failed, but community peer review didn’t)

What inspires you? What questions do you have about any of the above? And of course, what questions do you think we should include in the upcoming health survey?