Patient Powered Lyme Innovation - Let Your Voice Be Heard

Dear friends, 

I’m excited to introduce a Patient-Powered Lyme disease Initiative and encourage your participation:

The Dean Center for Tick Borne Illness at Spaulding Rehabilitation Hospital in Charlestown MA recently helped lead a Lyme Innovation “Hackathon” at MIT and UC Berkeley to problem-solve key issues facing Lyme disease.*

One project that won the support of the judges was the idea to create a patient-powered crowd source platform to give patients a stronger voice in Lyme disease.

This “Patient-Powered Lyme Initiative” is a patient voice/big data/open data project that will help drive priorities and solutions for those suffering with Lyme disease and tick borne illness. 

Results of the initiative will be shared with government leaders to influence research and funding priorities.

If you have, or have had, Lyme disease please participate in our pilot study (instructions and guidelines below) and please share with your friends in the Lyme community and social media.

Registration only takes five minutes. Once registered you have the option of voting on (for/against) all ideas for top priorities and solutions, and you can submit your own ideas and comments, too. There is also a place to briefly add your story about your Lyme disease journey. Please follow the guidelines below for logging into the site and inputting your ideas. Questions or feedback? -please contact me at helpbobfightlyme@gmail.com . The project is being led by Kerry Lang, the mental health counselor at the Dean Center. I am on the project team as well as a site moderator. Thank you for your participation!

Registration:

1. Click this link to enter the site:  http://patientpoweredlymeinnovation.ideascale.com/

2. Click register at the top right of page

3. Fill out your info. Site will send you an email confirmation. Check your email to validate registration

4. Once you have an account, choose a password

5. Vote for/against the ideas that have been posted as Top Priorities for Lyme Innovation and as Solutions for Diagnostics, Treatments, Rehabilitation and Prevention

6. Summit a new idea if you have a new priority or solution

7. Feel free to add comments

Guidelines for Submitting Ideas and Comments: 

Top Priorities for Lyme Innovation-

These ideas should consist of objectives you would like our government leaders to hear and focus on to address the Lyme disease epidemic. Please read through and vote for/against existing ideas and feel free to add new priorities. Please note new ideas will be moderated and may not be visible immediately. 

Solutions for Lyme Disease Diagnostics, Treatments, Rehabilitation or Prevention-

Please vote on and bring forth ideas that represent solutions. 

Comments-

Comments must be respectful, educational and/or solutions-oriented and will be moderated. 

Complaints about specific institutions, hospitals or doctors are not appropriate in this forum and will be deleted by moderators.

When commenting, please keep to the topic headings. 

Please try to avoid simply making complaints. Instead, please offer proactive and constructive solutions to change the Lyme disease landscape.

Examples of appropriate educational comments include personal anecdotes about how many doctors you’ve seen, how long misdiagnosed, how much this disease has impacted you financially, physically, emotionally, treatments that have worked, etc.

Try to keep your comments short (less than 50 words preferable, and not to exceed 150 words)

Let your voice be heard:

Again, this platform is innovation and solutions oriented. -Let’s not get caught up with politics but rather let’s bring the power of the patient voice behind ideas that will move us forward with the best priorities and solutions to address the issues facing Lyme disease.

Please share this project with social media and anyone you know in the Lyme community.

Thank you for your time. Thank you for letting your patient voice be heard. http://patientpoweredlymeinnovation.ideascale.com/

Warm regards,

 Bobby Sabatino 

Lyme Advocate 

Helpbobfightlyme@gmail.com

*A bigger follow-on Lyme Innovation Hackathon is taking place on June 17-19, 2016, at the Microsoft Nerd Center in Cambridge MA and all problem solvers are welcome to participate. (To learn more, please visit LymeInnovation.org.) Before the June event, however, we need your participation in our patient-powered initiative.