It was five and half years ago yesterday that I started OncTalk, which became GRACE.  Throughout that time, there have been two sides to the website: the “pushed” blog content, like written posts and podcasts, and then the “pulled” content of questions coming in from patients and caregivers on the discussion forum.  Over the years, the forums have grown and in many ways evolved from my original conception of being an opportunity for people to ask one-time questions from a cancer care expert to being a supportive, vibrant community.  But that has also come at a cost.

In contrast to the “pushed” content that requires a fixed amount of time to produce and then requires no additional effort whether it is accessed by 10 or 1000 or 100,000 people, the growth of the discussion forums requires an investment of far more time and effort when more people are participating, at least if most are anticipating answers from a physician.  To manage this pressure, our faculty has grown, as was always intended, and many of our patient and caregivers who are discussion forum regulars and moderators have often served as ad hoc faculty, at least temporarily providing answers that highlight links to faculty responses and posts that could help answer a question, obviating the need for as timely a response from a faculty member.

At the same time, GRACE has been working to expand into other tumor types.  It has been a difficult transition for the site, and for everyone participating here, whether as faculty, staff member, patient, or caregiver.  Working to serve many different sub-communities and offer content in so many formats has been a great challenge.   Not to mention the fact that with me also working a rather taxing “day job” as a busy oncologist caring for many sick patients with their own immediate needs, and as a husband and father of three, it’s been a lot to manage.  In fact, it’s become too much.  I spend 2-3 hours most days on GRACE in one way or another, at least half of that time answering questions on the forums.  That’s all unpaid, which I’m happy to do for an effort and community I care about, and I believe it should stay that way.

At this point, it’s become infeasible for me to commit to answering questions for an hour or more every day on the discussion forums.  There are other faculty members, and we can see how well it works for me to just cut back, but I’m seriously considering that the difficult complexity of the website and probably excessive ambition of GRACE to provide personal answers to large numbers of people within hours is simply not sustainable.  And while I truly value what feels like a community of people invested in one another on the discussion forums, GRACE isn’t the only place that can offer a supportive community and discussion forum.  

Over the past five years, the amount of time and effort we’ve been focusing on the community of the discussion forum probably amounts to “mission creep” from the core goal of providing credible, timely, and free cancer information to patients and caregivers to enable them to be informed participants in their care decisions.  So I’m stepping back and wondering if GRACE, me personally, and the rest of the faculty might be more effective not trying to do too much, juggling so many balls at once — because I feel that it’s no longer possible to continue without dropping some.  That might involve retiring the discussion forums and concentrating on producing more good content on the blog side, potentially answering limited questions as comments after posts, and accepting that other groups might well do a better job of creating and maintaining an interactive community.  And we might do more limited Q&A or other interactive opportunities on our own and/or in partnership with other organizations, like LUNGevity Foundation and their Lung Cancer Support Community.  

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One of the most consistent requests we’d received with the change to the new site format has been for a replacement for the link that allows members to generate a list of discussion forum additions since the last time people were on the website.

We haven’t quite been able to replicate that feature here — the new forums don’t quite support that right now, and there are still several distinct forums to monitor simultaneously.  However, I think Webmaster Mark has done a terrific job creating a new format for a page, as pictured above, that creates a collection of windows that allow you to scroll backwards from the most recent comment through the last 20 on each of the forum subjects you might be interested in.  There are customized options from the side bars on the right of the different areas of the site: from the areas with more general cancer information, you can click to bring up a page for just the general cancer forum subjects, or another link will bring up a page for ALL of the forums available for the site.  From the cancer specific areas like lung, breast, pancreatic, etc., you can click a link for the forums relating to the specific cancer you’ve been looking at, along with all of the general cancer forums, or another link will again bring up all of the forums.

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