As you may have heard, there is an exciting new national Canadian research network called the Canadian Lyme Consortium (CLC) led by Dr. Melanie Wills from the G. Magnotta Lyme Disease Research Lab at University of Guelph and Dr. Vett Lloyd from the Mount Allison Tick & Lyme Disease Research Lab.
The CLC is committed to meaningful partnership between patients, researchers and clinicians across Canada with a goal to produce ethical, transparent and patient-centred tick-borne disease research. The CLC scientists and clinicians all have full time jobs and need our help to turn this vision into reality.
There has been a lot of interest and questions from the community wanting to learn more about the CLC and the research that will be done. The CLC researchers/clinicians are finding it challenging to answer the volume of inquiries they are receiving so they have asked us to help them with this process.
We want to set up a CLC Facebook community as an initial, immediate step to enable the CLC to provide more information, answer questions and provide ongoing updates to the patient community. As well, this Facebook community can help create an interactive process whereby the scientists, clinicians and patients can communicate and share ideas in a transparent, organized and efficient way.
We Need Your Help:
Step one is to find some patient / community volunteers to help us set up the Facebook page and act as the liaison with the CLC scientists and clinicians.
At this time, we are seeking between 3-8 part-time volunteers (at least one from Eastern Canada, one from Quebec, one from Ontario, and one from Western Canada) who would be willing to share the role of CLC Facebook page admins, and for one of the admins to take on the role of CLC patient-liaison. All work will be done from your home. Needs include:
- your own laptop or desktop computer, familiarity with Facebook: set up a public group, knowledge of how to pin posts, post documents, write up a simple code of conduct, and a welcome letter explaining the purpose and process of the Facebook group, an understanding of basic admin role and processes on Facebook, ability to work and communicate with other admins in a collaborative way,
- to set up a generic CLC admin email (i.e. Gmail) that all patient inquiries can be sent to,
- to establish a schedule to regularly monitor the email inbox and FB posts and provide timely responses,
- to have one of the Admins act as the CLC patient liaison (or rotate) – to work with a CLC science liaison to facilitate communication between patient communities and the CLC scientists and clinicians, and
- to draft and post CLC “updates” at least 2x per month, and
- to create a broader database of volunteers who can contribute other skills from time to time such as website / graphic design, newsletters, translators (English/French), project management etc.
The following skills are required: Canadian Lyme patient or caregiver to someone with Lyme, basic Facebook “literacy”, basic experience with Microsoft Word & Excel, basic email admin / management skills, organization, communication & writing skills. If you have this skill set and are someone with a positive attitude who enjoys working with others, we would like to hear from you!
The following skills would be very helpful: prior Facebook admin experience, project management experience, other social media experience (i.e. Youtube, Instagram, Snapchat), website design, graphic design, admin experience.
This message is being shared across Canada by all the National and Provincial Lyme support and advocacy groups. If you are interested in applying to be on the volunteer team, please contact CanLyme here or your Provincial Lyme group by Friday April 6th with a brief note explaining your connection to Lyme disease, and how your experience / skills match the needs listed above, approximately how many hours per week you could dedicate to this initiative and your availability (days/hours).
Our goal is to have this Facebook page up and running by mid-April.