LYMEPOLICYWONK: IDSA APRIL DEADLINE

This just in from Lorraine Johnson: We have been discussing concerns regarding the IDSA hearing viewing restrictions with the Connecticut Attorney General’s Office, who has assured us that the registration requirement has been lifted and provided us with other information about the hearing. The information is fluid and more details may emerge. I will keep you posted on this as news develops.

This week I spoke on a panel before an international audience of researchers, healthcare policy makers, and physicians at the HTAi (Health Technology Assessments International) conference in Washington DC. The topic was putting the patient at the center of healthcare. Dr. Karen Facey from the University of Glasgow asked the panel two questions: 1) what would effective engagement of patients in research look like, and 2) what is the biggest barrier to patient engagement in research. Let me explain why these questions are important to patients with Lyme disease.

Over 6,100 responded to our IDSA survey within one month! That’s YOU being engaged. Everyone who has worked on this project has been deeply touched by your responses. In addition to answering our survey questions, over 1,700 patients offered their thoughts in a tiny comment box. I have to say, I was unprepared for the depth of responses offered. I know that those of us who reviewed the comments teared up. You may too.