Lincoln Residents Who’ve Had Lyme Disease: Take 2 Minutes, Get On The Map

 

Question: What is that new little map in our upper right-hand corner that says “Tracking Lyme Disease In Lincoln?” Answer: As part of an upcoming WBUR series, we’re inviting residents of Lincoln who’ve had Lyme disease to self-report it by clicking on that map and then on “Post a report.” [Update: After the series ended, we took the map off our homepage but it’s still available here.]

Why? Many aspects of Lyme disease are controversial but this one isn’t: The official count of cases greatly underestimates how many there actually are. This is an experiment using Lincoln as a sample Massachusetts town.

The map, developed by public health informatics wizards at Boston Children’s Hospital, will not yield official data. But it can provide a better sense of how widespread Lyme disease actually is in Lincoln, and where the biggest clusters lie.

If you’re a Lincoln resident who has had Lyme disease, please take two minutes and weigh in. This map won’t be complete without your report. And please spread the link to your neighbors and friends.

For specific questions, please email careyg@comcast.net, and my apologies in advance for any confusion — did I mention that this is an experiment? But it’s a rare chance to try “crowdsourcing” the answer to a question of high importance to the town (and far beyond its borders.) Here’s a basic FAQ and guide that will evolve as input rolls in:

What do I put in the headline? 

We suggest age, gender and “diagnosed with” or “probable.” Please do a separate report for each person in your household being reported, and for each time you were diagnosed.

Should I put my home address on “street or road”?

Well, it’s up to you; each report drops a virtual pin into its location on the map. We put “street or road” rather than “address” so that we could preserve some privacy for people while still giving a sense of where clusters lie. If you believe your Lyme disease came from somewhere outside of Lincoln, please still put in your street but write the location where you were infected in the “description” box.

Will my email be public?

No, but we need it in case we need to verify something. Please do include it! Without an email, the report cannot be posted onto the map.

What should I put in “Description”? 

Please include the rough date of your infection. Otherwise keep it as brief as you’d like. Some suggestions:

If you know, was the tick local or had you traveled recently to other Lyme-heavy territory and might you have gotten infected there?

Was your case “acute” — in other words, recently acquired? With what symptoms? Did you find a tick?

Or was it later-stage Lyme disease? With what symptoms?

Any lab tests? What results?

I clicked “Submit” but don’t see any difference on the map.

Please click the “refresh” button on your browser. It should show up.

 

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