Redesign time: What are your thoughts?

The initial era of Walking with Jane is drawing to a close. As we head into the next era, we need to rethink what we are doing--and redesign the website in accord with the new role and the new goals of the organization.

The initial era of Walking with Jane is drawing to a close. As we head into the next era, we need to rethink what we are doing–and redesign the website in accord with the new role and the new goals of the organization.

Redesign long overdue

Just about 6.5 years ago we started the design of walkingwithjane.org. At the time, it was a state-of-the-art design. We tinkered with it over the first year or so, but content reigned over all else in terms of effort. We had a particular set of goals in mind, and designed accordingly. We haven’t done a redesign since.

…I’d like your input…

Last year I was on the periphery of the design of the 3-in-3 campaign website. The rough draft blew my mind. It drew on everything that has evolved over the last several years. It was the website I hope we would have designed today if we started from scratch.

Redesign needs to reflect changes

Except, it’s not. There are features in it I like, but it was designed for a very different purpose than this one was. Nor is this website designed for the new focus I have in mind for the next three years of Walking with Jane. Times have changed. Our goals have changed. This website must change to reflect those changes.

The rough draft blew my mind.

In 2011, I felt we needed to be all things to all people. It proved too great an undertaking for one person to maintain. Others have come on the scene who do what I wanted to do, only better. The Carcinoid Cancer Foundation provides better resources for patients and caregivers than anything I can provide. We now have dozens of support groups. We have other sites and individuals gifted at translating doc-speak into human terms.

Redesign for general audience

But we are still weak in two areas: fundraising and general awareness. NET cancer research funding has shown steady improvement since 2010, but still lags far behind diseases with fewer patients at risk. NET cancer has become the second most prevalent form of gastrointestinal cancer, trailing only colon cancer. Within three years, we can expect it to reach levels that will end its legal status as a rare disease.

Our goals have changed.

Walk down the street and ask 10 people what cystic fibrosis, pancreatic cancer, or MS are and people will know them. Ask those same 10 about NET cancer–more prevalent than any of them–and you will meet blank stares. If doctors can’t detect what they don’t suspect, can’t suspect what they’ve never heard of, we cannot expect people to donate to research a disease they don’t even know the name of. Nor can they suggest to their doctors that their symptoms may add up to something more deadly than a little intestinal discomfort.

Redesign for medical folk, patients

We need to continue to educate primary care doctors, physician assistants, nurses and specialists likely to encounter NET cancer, as well. I talk with every doctor and nurse I encounter. Rarely have any of them even heard of NET cancer even under the term carcinoid. Those who do, rarely know anything beyond what they learned years before in a passing mention in school.

…more deadly than a little intestinal discomfort. 

And we need to continue to help patients understand the various treatment options they do have through the personal stories of patients who have experienced things like PRRT, telotristat, and liver embolization, to name just three. As the number of treatments grows, patient awareness of those treatments needs to grow as well.

Redesign input requested

I have some ideas about what a redesigned walkingwithjane.org looks like. I’m talking with some web designers over the next few days. But I’d like your input as well, both in terms of what the site looks like and what the content needs to include. What can’t you find that you need to find?

…we need to continue to help patients…

And I’d also like you to think about sites we need to link to that are doing good work. I don’t see a point to duplicating what others are doing well or have the resources to do better than I ever will. For example, if you want to find a doctor, you can’t do better than the Carcinoid Cancer Foundation’s listings.

You can post your thoughts in the comments section below or contact us at walkingwithjane@gmail.com.

Posted by walking with jane on January 17, 2018

2 responses to “Redesign time: What are your thoughts?”

  1. tensnut says:

    Content suggestion…Since the number of patients diagnosed is growing, hopefully that means that the disease is getting identified earlier. Much of what we find on the internet is about the early phases of diagnosis (or more specifically missed diagnosis) and A LOT about managing carcinoid syndrome. I believe the bulk of NET patients are in the middle stages. Detected early, slow-growing, no syndrome, first line protocol of either “wait and watch” or monthly SSA. I think of us as Shadow NETs. That is fortunate for us, but we still have issues with daily life with this disease. We need to know about maintenance both medical and emotional, diet, doctors, insurance, trials, predictions, new treatments, etc. Occasionally, you’ll see an article titled something like “Living with NETs” and it invariably turns out to be all about syndrome. There are a lot of us out here who hope to manage this as a chronic disease. If all we talk about is the worst, we will scare off people with our awareness efforts. Awareness campaigns need to be honest about the realities. Your website may have a different focus, but thought I’d express my frustration. Thanks for your efforts!