Experiences exploring BCC patient communities, part 1

On my first post about my BCC (basal cell carcinoma), seeking patient communities and other information, I was pleased that people submitted four communities.  I posted them to my very informal patient communities page:

Tonight (Feb 20) I’m exploring them for the first time.  I didn’t find any useful information yet, so you may want to come back another day.:)

  • If you know of other communities, please submit the URL in a comment below.

This won’t be of interest to most people – it’s mostly for people who want to study what a site should be, and the process of exploring.

Preface – my purpose and context

A note before I start the research: don’t draw any generalizations from these notes; I’m just documenting my process, not trying to be comprehensive. I’m not rating them the way ZDNet rates cell phones; I’m documenting what happens today when a reasonably awake patient goes looking for good information.

And the purpose of that is to help interested parties understand the state of affairs today, to think about building a better tomorrow.

A point of reference for new readers: as I’ve said in many of my videos, when I joined ACOR’s kidney cancer patient community five years ago I quickly found:

  • access to high quality information about treatment options
  • information on finding good clinicians
  • nuanced, accurate perspectives on what it all means
  • empathy: answers to my questions that weren’t textbook medical, but were important to me
  • practical tips on dealing with side effects

Why it matters: A key issue in the patient engagement movement is that we currently don’t have a well developed set of patient networks whose quality is comparable to the ACOR kidney cancer group. Significantly, we also don’t know how to “grow” more of them.

Research implications: I’ve said before that I’d love to have some sociologists study the dynamic by which some clusters of patients (online or off) mature into robust, high quality patient networks and others don’t. For now, we’re groping in the dark. it’s a start. (I bet it’s not specific to medical communities: why do some software forums become great and others not? Some car user forums, and others not?)

Here’s a summary of findings, then some notes on each site.

Summary observations from tonight’s first visit to the four sites:

  • Criteria about the website itself
    • A primary factor in the usability of a site is the ability to browse and search. (The same could be said of the whole Web, ahem.)
      • Programmers, please make your search accept quotes for intact phrases. When I search “basal cell” I don’t want every message that contains “cell.” If you don’t know how to do this, use Google Site Search (it’s free) instead of writing your own.
    • BUT, website usability amounts to nothing if the site doesn’t have what you want.
    • Hey, usability people: please when you ask new members for a password and username, tell them if you have rules. It’s perverse and abusive to only tell the rules after the person did something unacceptable. (I mean, how hard is it to say “must contain numbers and letters”?)
  • Criteria about the community – the social network
    • One red flag is if people assert that their personal experience is the rule. That’s ignorant.
    • Another red flag is if nobody calls them on it.

Site notes:

Again: do not read these as evaluations of each website or each community. Within websites the communities vary – not all ACOR sites are like the kidney cancer one – and besides, this is  just my diary.

1. EmpowHER basal cell community

  • Patient network: It seems there there are only three questions, and the most recent answer was in 2010.
  • Definition & overview is minimal at best. (A question for planners: what criteria should a great resource fulfill?)
  • Treatments: just a list of 8 bullets listing the treatments.
  • Expert advice: none.

Conclusion: not every site is full of gold. It didn’t cost much time to learn that. Moving on.

2. PatientsLikeMe basal cell community

  • 41 patients in the basal cell skin cancer community.
  • Good UI – easy to get oriented, no wondering “What am I supposed to do now?”
  • You can “follow” (in a Facebooky sort of way) people you find interesting, so their remarks show up in your view
  • You can “like” comments that have been posted.
    • Side note: I’ve long said (starting 3 years ago this week on e-patients.net) that I’d like to see two different ratings tracks  - one for lay readers and one for experts (clinicians or expert patients). That’s because in my view the whole purpose of ratings is to help future readers find what they need, and that varies depending on your skill level.
    • Note: I included expert patients with clinicians. My experience on ACOR is that expertness is not correlated with years of schooling.
  • The “patients like you” list seems to show me people demographically similar (60s males) with all kinds of conditions – I want BCC patients – maybe that’s not how this works.
  • I can’t readily find any info on BCC (and searching for “basal cell,” even in quotes, produces basal hits and cell hits), so I’m going to do what the site recommends: post an “Introduce Yourself” note, and say what I’m looking for.

Next up:

3. American Cancer Society’s Cancer Survivor Network skin cancer forum

  • 62 posts show up in a “basal cell” search
    • Hm, it’s not restricted to that disease – any post containing that string shows up in the search. It’s pretty normal these days for forum search software to let you restrict it to “in subject line,” but not here.
  • I like that you can sort the list by most-replied-to
  • Good discussion of costs in one thread.
  • Numerous assertions of “this works” / “this worked for me” about various remedies; nobody in the community is questioning anything (except those who question the established treatments).
    • Note to self: I bet one trait of a robust community is that unusual assertions are questioned.
  • No discussion at all, sigh, of one treatment option vs another.
  • Most posts are old – not much activity.

Finally:

4. Inspire.com http://www.inspire.com/groups/skin-cancer/

  • Has a nice “recommended discussions” feature within each forum.
  • Unfortunately, this one too has not much discussion, and only one recommended discussion.
  • Again, not a word about comparing treatment options.

Bottom line: I’ll post an introduction on PatientsLikeMe, expressing what I want. I may return to some of the others and do the same another day.

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