Is GRACE “Just” a Resource or a Cancer Community? Concerns About Being a Wire Monkey

August 19, 2009 - 7:41 pm email to a friend

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Dr West

Yesterday I described a great meeting we had with the Seattle- based marketing, advertising, and site design firm Creature, in which they outlined their vision of a streamlined site with a much improved user interface. We can all agree that there’s so much informatio here that it’s hard for people to find what they need — and we’re confident that we can improve that. But another facet of their presentation was that GRACE should focus on our unique core strengths, which are that we are perhaps the only place in the online (or brick and mortar) world that brings together:

1) qualified experts committed to helping patients understand their cancer and treatment options

2) motivated patients and caregivers who can be enabled to learn more than they ever could before about their cancer, and therefore become actively involved in their treatment like never before

3) a lot of timely content for people to access at no cost

That’s all great. By eventually developing a “wiki” of cancer information that can provide useful summaries, and by developing customized pages that feature faculty-generated content side by side with questions from members (and answers from faculty), members should be better able to find what they’re really looking for.

But the other side of the coin was that the new site would eliminate some features we currently have. Some extraneous stuff like Twitter updates could be linked to the individual faculty member (which makes sense — these aren’t very rich in educational content). But the biggest change could be the elimination of a member forum that has members comment on the questions and concerns of other members. This essentially means that GRACE would no longer feel anything like a “community” and would potentially be purely an educational resource.

Maybe that’s okay. Google is an incredibly useful tool, but it doesn’t offer a community. Perhaps GRACE should concentrate on being a very efficient, credible information resource for the cancer community and not worry about providing a sense of support and providing a sense of connection if you can get that in other settings.

That’s probably playing to our core strengths and unique features, but I’ll admit that I’m not completely comfortable with that personally. For one thing, I know I learn a lot from members, who often point the faculty in the direction of findings we may not have known about and can generate observations that may help us observe connections that we may never pick up in the clinic. And every single day GRACE members provide support and encouragement and connection, as well as insights, to other members.

The second factor is that people develop a connection with people, not a faceless entity. At our recent GRACE fundraiser here in Seattle, it was clear that the people who were motivated to come and contribute were almost entirely people who knew and wanted to support me or a few other key people who were part of the evening. This reminds me of the memorable if somewhat disturbing work done by Harry Harlow, a psychologist from the University of Wisconsin who, about 50 years ago, conducted (controversial) experiments with baby rhesus monkeys to see if they valued warm, fuzzy comfort or food more. He created a wire fake mother monkey with a bottle of milk, then next to it a cloth covered fake mother with no food, and he found that the baby monkeys spent the minimum time on the wire mother to eat, then returned to the cloth mother for comfort as much as possible.

monkey-experiments

Essentially, the question is whether we want to strive to provide only what people need to the exclusion of an enriching, supportive experience (even if that’s not a unique feature we can provide). Do people really come here for medical information only, or is any sense of community and connection to other people a real value added?

To answer this, we need to hear the views of our users. People may want to leave comments here, or people can e-mail info@cancergrace.org to provide private insights (in case you don’t want to leave a public comment of ”the medical content is valuable but I don’t care at all about other people’s issues”). We’re also working on getting the polls up and running again as an anonymous way to highlight what people really value from GRACE. In addition, we’ll be reviewing the web traffic data to try to understand more of what areas of the site people visit most (actually, someone else will probably be doing this — I’m also trying to stick to what I’m already doing and delegate the rest).

One leading alternative to the current GRACE broad forum is to have specific groups/social networks of members, such as for extensive SCLC, post-surgical patients, stage IV NSCLC with brain metastases, patients on Tarceva, EGFR mutation patients, etc. These would connect to the landing page where people find the posts and question/answer threads on the topic they were looking for. A member who was looking for info on brain metastases in advanced SCLC would find information (posts and Q&A threads) about managing brain metastases and extensive SCLC on their landing page, along with links to the relevant networks of extensive SCLC and brain metastases. People can join specific groups, and probably multiple different ones (someone may belong to the group on advanced NSCLC, brain mets, patients currently on alimta, plus others, all at the same time). This way, members could still connect with people in a meaningful way, supporting and learning from each other.

We have new blueprints for what GRACE could/should be up on the drawing board, but we’re still considering whether it should be all about the faculty-generated evidence or a peer-to-peer experience. There’s no question that patients and caregivers can help each other and teach me and the other faculty a lot. The key question is whether the community is something that people really want from GRACE or whether they could readily get this elsewhere.

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