Canadian Lyme Consortium research network wants you! Such an important cause, please read and pass along.

June 23, 2018

Hi Folks,

CanLyme is a proud and active supporter of the Canadian Lyme Consortium research network and here is their most recent communication…

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Greetings fellow members of the Lyme community;

I am reaching out on behalf of the Canadian Lyme Consortium (CLC) research network to the Canadian Lyme community with an important update and invitation.

As many of you have heard, the CLC is a volunteer research network which includes medical professionals, academics, scientists, Lyme disease patients and advocates – with the goal of creating an inclusive, and collaborative team to advance patient-centered Lyme disease research in Canada.  The CLC aims to bring together people who are passionate about finding solutions to Lyme disease through research, and who are committed to ethics and partnership as well as research that seeks to help patients.

Our first goal is to create a mechanism whereby patients, advocates and concerned Canadians can “dialogue” with the medical/academic/scientific members of the team, learn more about the CLC and its members, receive updates and invitations to participate in projects, ask questions, and especially important – contribute ideas that will help shape the path forward.  We would like as many people as possible from the Lyme community to be involved as we forge a new and different research path together.

It is important to note that the Canadian Lyme Consortium (CLC) is not a funded organization. We are not the CIHR and Public Health networks. We do not have government or public health support. There are no paid positions in CLC as it is a collection of volunteers working together donating their time, energy and expertise.  We believe that by drawing on the passion, creativity, knowledge, experience and skills of the Lyme community across Canada, we can help change the narrative around Lyme in Canada through ethical science.

As we previously shared, the CLC decided not to apply for the $4 million of Lyme funding offered through the CIHR.  As a group we decided that holding true to our vision and values for patient-oriented research was our priority.  We have therefore decided to seek alternate sources of project funding through the normal scientific and research funding channels that will allow us to conduct the research we believe is in the best interests of patients and to do it in within a meaningful partnership with patients and in an ethical manner.

Something we are very excited about, which is not typical in the medical research world, is our “idea hatchery”.  Conceptually, this will be a way for members of the CLC (including patients) to propose specific research projects.  If the idea is endorsed by at least 1 patient, 1 medical professional and 1 scientist, the idea will be approved to go to the next stage of investigation / planning etc.  We believe that it is absolutely critical that patients are involved at every stage of research – including at the planning stage.  

Over the past several weeks, we have been reaching out to the different provincial Lyme groups as well as to the scientists and doctors in the CLC to ask how we could better work together and what people’s needs are. We heard loud and clear – the main need right now is for communication.

Thus, the reason for this update and invitation – we have a CLC summer intern (Maddy Russel) and we have asked her to help us identify opportunities for the community to get involved and get the communication flowing. The list below is of some areas where there is a need for help in order to facilitate this partnership and communication.

We hope that you will be inspired by our vision and read on to see if you would be interested in joining the CLC team in a way that works for you.

It should be noted that all of these roles are flexible, they can be taken on by one person or by many (which is better) who share the job, they can be taken on short term and part time. The goal is to create a large team so when people have down days or are not able to do much, they know there will be others to help.

If you feel that you would like to help with any of these tasks [below], please contact our summer CLC intern, Maddy Russel, at mdrussell [at] mta [dot] ca.

We look forward to hearing from you!

Dr. Vett Lloyd,

List of Needs

Social Media Coordinator

What this is:

Set up a Facebook page for the CLC and coordinate the volunteer admins (set up schedule, answer questions, etc.). Write a code of conduct for the Facebook page that has policies that members must follow; if these policies are not followed then members can be removed. Monitor posts to assure they are appropriate and redirect concerns or questions that fall outside of the scope of the CLC – refer to support groups for example. Post updates, maybe in the form of a FAQ document, of what the CLC is doing, the status of projects, science related topics that are of interest to patients. Collect info from people wanting to volunteer for the CLC and send this information to the Volunteer Coordinator. These same ideas could also extend to other social media platforms, such as Twitter, Instagram or SnapChat.

Needs:

-own computer

-familiar with social media platforms

Nice to have:

-proficient with social media platforms

-management skills

-PR skills

-conflict management

-writing skills

-science literacy

Social media admins

What this is:

Work alongside the Social media coordinator. Work shifts during the week where you can approve requests to join the group, monitor the Facebook page to assure no inappropriate posts, unproductive dialogue, etc. and redirect people with concerns or questions outside of the scope of the CLC. If issues arise, bring them to the social media coordinator. Research and post CLC updates and other scientific news. Collect info from patients or other people wanting to volunteer for the CLC and send this information to the Volunteer coordinator.

Needs:

-own computer

-familiar with social media platforms

Nice to have:

-proficient with social media platforms

-PR skills

-science literacy

-writing skills

Community engagement liaison

What this is:

Be the link between patients and the CLC. On a daily or weekly basis (depending on the volume of questions) collect questions and concerns from the patient community and send them to the volunteer coordinator (who will then redirect them to the appropriate person, i.e. scientists, for answers). The community engagement liaison will then communicate the answers back to the patients. This job would consist of gathering large volumes of questions and summarizing them into relevant, focused questions. The community engagement liaison will also monitor the idea hatchery and send relevant information to the Volunteer Coordinator.

Needs:

-own computer

-communication skills

Nice to have:

-experience working with people in difficult situations

-science literacy

-writing skills

News-Letter editor

What this is:

Create, write and edit a news-letter to be sent out on a regular basis. The news-letter would consist of updates of the CLC and summaries of new research and info from experts. The

news-letter editor would also collect names and information from volunteers and send this to the Volunteer Coordinator. This job would involve summarizing scientific information so as to be more accessible.

Needs:

-writing skills

-science literacy

-own computer

Nice to have:

-editorial skills

-PR experience

Event Coordinator

What this is:

Schedule and coordinate events for the CLC (meetings, conferences, education sessions, etc.).

Needs:

-own computer

-organizational skills

-communication skills

Nice to have:

-comfortable with public speaking

Ethics Investigator

What this is:

Figure out the complaints process for various federal agencies and departments, as issues arise. Conduct freedom of information inquiries, as issues arise.

Needs:

-discretion and good judgement

-enjoys research

-detail oriented

-absolute commitment to confidentiality while investigations are in process

Nice to have:

-strong writing skills

-familiarity with Governmental and or legal processes

Volunteer Coordinator

What this is:

Coordinate CLC volunteers by communicating with the CLC board, clinicians, scientists and volunteers. Match volunteers with jobs/positions based on their skills and experiences.

Needs:

-own computer

-communication

-emotional tact

-writing skills

Nice to have:

-familiarity with Social media platforms

-science literacy

Translators

What this is:

Translate CLC documents from English to other languages (mainly French) and vice versa.

Needs:

-writing skills in more than one language

-own computer

Nice to have:

-science literacy

-editorial skills

Coordinator of grass roots tick public signage

What this is:

Coordinate groups of varying regions that are trying to promote public health related to tick bite prevention and tick awareness (i.e. Tick warning signs). This may include coordinating tick info presentations from scientists, tick drags, etc. The coordinator may also take part in public health awareness in their community.

Needs:

-communication skills

-desire to promote public health

Nice to have:

-science literacy

-comfortable with public speaking

-writing skills

Science/medical literature “virtual librarian”

What this is:

When requested, access articles from journals, download PDF and place in a password protected google docs or Mendeley.

Needs:

-own computer

-access to large library with online journal access is required

Nice to have:

-familiarity with google docs/Mendeley

-communication skills

Introduce tick ed. into classroom

What this is:

Adapt existing tick education programs and material for Canadian students. This would include working with school boards, teachers and coordinating with scientists to adapt/develop a lesson plan for elementary schools, middle schools and/or high schools.

Needs:

-teaching experience

-comfortable working with school boards

Nice to have:

-organisation

-communication

-writing skills

-science literacy

Speakers bureau and coordinator/ Tick bite prevention presenter and coordinator

What this is:

Coordinate scientists to give presentations about ticks/Lyme disease. Reach out to local Lyme groups and coordinate presentations.

Needs:

-communication skills

Nice to have:

-science literacy

-public speaking

Community tick dragging

What this is:

Coordinate tick dragging and give resources to people wanting to go tick dragging.

Needs:

-communication

-desire to promote public health

-own computer

Nice to have:

-familiarity with tick dragging

Executive summaries of issues – review books

What this is:

Read books and series of papers about Lyme disease and provide executive summaries. This involves reading the books and condensing the information into an objective summary.

Needs:

-reading skills

-writing skills

-objectivity

Nice to have:

-Science and medical literacy