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Caregivers Outnumber Patients in Online Medical Communities

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Caregivers Outnumber Patients in Online Medical Communities: Thoughts on Why?

http://blog.lungevity.org/2011/07/28/ca ... -patients/

July 28th, 2011 - by Dr. Jack West

At one of the ASCO meeetings a few years ago, the folks who developed a Dutch educational website about lung cancer called longkanker.info, described their growing experience of serving the community of patients and caregivers with lung cancer (and while I suspect that it’s a good site, though I can’t read any of it since it’s in Dutch, so I can’t really recommend it). They reviewed their growing numbers of people in the Netherlands they were reaching, as well as how they were working to publicize it through local oncologists’ offices, but they also described their audience, which was disproportionately women more than men, and more caregivers than actual patients with lung cancer (both about 2/3 vs. 1/3, not an overwhelming majority). Moreover, the Pew Internet & American Life Project has also seen the same trends.

I don’t believe that LUNGevity keeps those records, but I think the same trends hold up here from what I’ve seen. That women are more likely to seek health care and information (and road directions) than men is a very consistent finding. But I’m particularly interested in the question of why caregivers outnumber patients in online medical communities, and perhaps especially those focusing on cancer.

Probably the leading speculated explanation is that caregivers review the information, including some that is likely to be unwelcome to think about for the actual patient, and then filter what is conveyed to the patient who may want to know only a fraction of what could be shared. Because there are plenty of statistics and projections that appear in our posts here, and many of these stats are less than festive, I could easily envision that many patients are not eager to read the details in posts or see and hear the details in podcasts that could be downright discouraging.

One other reason I could foresee caregivers being particularly drawn to cancer education and support sites is that they can provide an opportunity to do something constructive at a time when cancer can be so humbling in terms as an all too uncontrollable situation.

Finally, I know that for at least some patients, they may be too ill to focus on attending and participating in a website community, and/or that they feel that they’re already spending too much of their lives dealing with cancer in terms of visits, treatments, etc.

I’d be very interested to know from the caretakers if they have insights as to why their relative or friend who is the patient isn’t inclined to seek out information directly: is it helpful to filter what you learn? Is it just that one person takes the wheel and starts to drive, so the rest of the group is comfortable relying on having the path guided by one reliable and knowledgeable person? For the patients who are seeking the information themselves, is this out of necessity because no other person has stepped in? Would you want to have access to all of the information yourself even with others trying to seek information on your behalf? And is there information you find, here or elsewhere, that you’d be happier to have not encountered?

Online patient and caregiver communities are changing the complexion of health care quickly; I wonder if there are ways to improve the experience here and at GRACE more for people. I’m eager to get your thoughts.

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