LYMEPOLICYWONK: Take our survey on NIH’s Lyme disease strategic plan
The National Institutes of Health (NIH) has invited public feedback on its tick-borne disease research strategy. LymeDisease.org will be submitting comments, and we want to include your opinions.
The time frame is extremely tight, with comments due in two weeks. Please take the survey this very moment if you possibly can, so we can include it in what we tell the NIH.
What kinds of research do you think are most important? Who counts as a patient representative? Should the research funding panel include patients? How about physicians who treat Lyme disease? Should it include innovative projects using big data from thousands of patients? Should community-driven research projects like MyLymeData play a role? Tell us what you think!
We would like to include a wide range of viewpoints in our survey. Please take part if you are:
- A person who has or has had Lyme disease
- A family member, caregiver, or friend of a person with Lyme disease
- An organization or group representing the interests of patients with Lyme disease (including Facebook support groups)
- A scientist who conducts research in Lyme disease
- A clinician who treats Lyme disease
You can find out more about the NIH Lyme disease research strategy request for comment here.
This is an opportunity for the patient community to weigh in on its priorities, its concerns, and how the research agenda and funding for research might better include the patient voice.
The survey should take 5 to 10 minutes to complete.
Lorraine Johnson, JD, MBA, is the Chief Executive Officer of LymeDisease.org. You can contact her at firstname.lastname@example.org. On Twitter, follow her @lymepolicywonk.