On Thu 11 Dec 2003, I received a request for an interview,
via email, from a journalist (Larry Stevens), who appears to
be a contributing editor for a toll-access periodical,
"Internet Healthcare Strategies" (www.corhealth.com).
In the fall of this year, I had already exchanged some
email messages with him (in relation to the ethics of "list
mining") as a result of a thread on that topic on the
MedWebMasters-L (MWM-L) mailing list (an ACOR list). My
conclusion from that previous exchange of messages was that
"journalistic ethics" differ substantially from "research
ethics" (surprise, surprise!).
He had already read my commentary, "Evaluation of support
groups for women with breast cancer: importance of the
navigator role", that was published earlier this year in the
open-access journal "Health and Quality of Life Outcomes",
2003(1 May);1:16, http://www.hqlo.com/content/1/1/16
His questions were (with minor re-wording by me):
1) What role do mailing list groups play: are they primarily
supportive, or informative?
2) If the latter, what's the advantage of patient-to-patient
information sharing in comparison with surfing the Web for
information?
3) Isn't it inevitable that inaccuracies pop up in support
groups?
4) Might it be more difficult to determine the reliability
of someone in a support group than the reliability of web
sites?
Here's the text of my (long!) response, exactly as I sent
it to him:
My impression, based mainly on experience with the
Breast-Cancer mailing list (BCML), is that for some people,
the list is primarily informative. So, they participate for
a while, obtain the information (and perhaps some support)
that they need (or don't obtain it), and then they
unsubscribe. For others, the list is primarily supportive
(but also informative), and they may become longer-term
subscribers.
It's also clear to me that an important reason why some
longer-term subscribers continue to subscribe is so that
they can "give back" to new list members some of the kinds
of information and support (and advocacy) that they found to
be very helpful when they themselves were "newbies".
I believe that a great advantage of electronic support
groups (ESGs) over simply surfing the Web is that ESGs, such
as the BCML, are *interactive*. One can ask questions, have
them answered from various perspectives, and then seek
further clarification of points that have elicited ambiguous
or conflicting responses. Often, on a busy mailing list like
the BCML, there are existing subscribers whose personal
situation (medically, and otherwise, e.g. in relation to
values and perspectives) is a good match with that of the
newbie, and they can then correspond more extensively
(often, privately, off-list).
I also believe that (as I tried to point out in my article
in Health & Quality of Life Outcomes) a good-quality mailing
list has good-quality "navigation" as one of its crucial
characteristics. Musa Mayer, a breast-cancer survivor and a
skilled and experienced author and advocate, is one of the
people who plays this role on the BCML. If someone makes
assertions that are not evidence-based, Musa usually posts a
message that (quite carefully and tactfully) questions the
assertion and points to some relevant evidence in the
literature (e.g. in the literature about clinical trials for
breast cancer, about which she is quite well-informed).
She's not a formal list "moderator", or even a "monitor". I
regard her as a "navigator". She regards herself, I think,
as a "patient advocate".
I also occasionally provide some "navigation" to the BCML
myself (mainly, in relation to cancer epidemiology, because
I'm a member of a research group that's active in this
area, and I have access to the relevant evidence).
About the reliability of information obtained from
individual members of an ESG: Of course, there's enormous
individual variability in the knowledge, experience,
perspectives and values of individual list members (on the
BCML, as on the MWM-L). A major reason why I've been a
long-term subscriber to the BCML has been because of the
in-depth insights it has provided about these kinds of
variability. And, it's not just the perspectives of
participants in the BCML as "patients" that are interesting,
it's also their perspectives as women, or as members of a
particular profession, or as members of a particular
culture, etc.
But, it should be stressed that the membership of an ESG
isn't a random sample from the entire population of
potential members. My impression is that the participants in
the BCML are (in epidemiological language) a very biased
sample, self-selected to differ from the entire global
population of breast-cancer survivors in many ways. Examples
include access to (and ability to cope with) Internet-based
technologies; willingness to write openly about issues of
interest to them and ability to express themselves in
written English; interest in an "information-seeking"
approach (e.g. in contrast to a "denial" approach) to coping
with breast cancer; nature and extent of their prior
experience with breast cancer or breast-cancer risk-factors;
etc. However, an "online community" of this kind seems (to
me) to be a potentially-rich source of well-informed
advocates and activists, and hence, of much interest from a
population-health perspective (which is the traditional
perspective of an epidemiologist).
My own experience has been that one soon reaches a
satisfactory understanding of the strengths and weaknesses
of other long-term members of mailing lists like the BCML.
(They have, in effect, become members of one's own "extended
family", in that such "families" are, increasingly,
scattered around the world, and stay in touch, at least in
part, via Internet-based technologies. For example, I have a
niece who is currently living in Australia, and I have
relatives in England and various parts of the USA and
Canada. Most have email addresses, and a few have websites).
And, individual members of the BCML need not remain
"fictions constructed in cyberspace". Members of the BCML
have held many face-to-face meetings, including small local
ones (e.g. in Australia, England, and various parts of the
USA) and a larger one that has been held yearly, for the
past several years, in either the USA or Canada. I haven't
participated myself in such meetings, but I have met some
individual BCML members face-to-face. I have even worked
with a few of them, on (for example) committees and/or
working groups supported by the Canadian Breast Cancer
Research Alliance. (The CBCRA is the major national agency
for the support of breast-cancer research in Canada, see:
http://www.breast.cancer.ca).
So, there definitely are ways to determine the reliability
(can one rely on them as a credible source of useful
information?) and the validity (are they who they claim to
be?) of those who play major "navigation" roles on mailing
lists like the BCML. But, I believe that more research is
needed on the evaluation of various approaches to
"navigation", for all kinds of support groups (online or
face-to-face). This is because, as already noted above, I
believe that the quality of such navigation is a major
determinant of the quality of the support group. Hence my
article in Health & Quality of Life Outcomes.
Long answers to your short questions.
--Jim
PS - About ways to protect the privacy and confidentiality
of vulnerable members of a mailing list in a public forum
like the Internet, see, for example. the "ALL-KIDS email
list": http://www.all-kids.org/main.html
An excerpt:
"New members and old members: take some time to read the
Guidelines for the list. Most of the items listed there are
not hard and fast rules, except for flagrant violations of
appropriate behavior such as selling items or services on
the list, mining the archives for the purpose of collecting
information about members, or posting any unlawful,
fraudulent, threatening, abusive, libelous, or otherwise
objectionable or harmful information of any kind. These hard
and fast rules are there to protect members".
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Received on Fri Dec 12 12:35:29 2003