Evaluation of PHAC’s Activities for the Federal Framework on Lyme Disease

As some of you may know, the Office of Audit and Evaluation (OAE) at the Public Health Agency of Canada (PHAC) is undertaking an evaluation of PHAC’s activities in support of the Federal Framework on Lyme Disease and Action Plan. This evaluation will assess the effectiveness of PHAC’s activities from May 2017 until March 2021. The evaluation will identify any successes, as well as opportunities for improvements.

As a key stakeholder involved in Lyme disease activities (I run the NS Lyme Support Group), I was able to have an interview with staff of the OAE. Based on the questions provided, it seems quite evident, to me anyway, that PHAC is quite happy with what they have accomplished to date. Unfortunately, I feel quite different about that as I believe they have not been effective in getting any of their updated, or new, information out to the general public and health care providers.

Based upon responses received, the OAE has recently decided to broaden their reach and provide an open link to a survey which will now remain active until July 16, 2021 – https://ca1se.voxco.com/SE/79/Lymedisease_MaladieLyme. (You may have to cut and past the link.) The interview was much better, in my opinion, than the on-line survey (I did both) as the on-line survey only has a couple of spots where you can provide additional comments. However, I believe the more that take the survey, the better. It takes approximately 10-15 minutes.

Some of the questions included in the interview, and in the on-line survey, were:

  • How familiar are you with various Lyme disease surveillance activities and products completed or supported by PHAC? (For example, surveillance through the Canadian Notifiable Disease Surveillance System (CNDSS), Lyme Disease Enhance Surveillance (LDES), risk maps, region specific products, annual reports, web postings, infographics).
  • What impacts, if any, have your members observed on health professionals capacity to address patient needs as a result of PHAC’s activities in guidelines and sharing best practices – including research.
  • How familiar are you with PHAC’s produced or supported Lyme disease education and awareness activities/resources? Specifically for
  • – Those directed at the Canadian public and produced by PHAC (i.e. social media, Canada.ca/Lymedisease, posters and wallet cards for Canadians, including Indigenous peoples; awareness campaigns, children’s exhibit, etc.); and
  • – Those directed at Health Professionals and produced by other organizations with funding from PHAC (i.e. the Centre for Effective Practice tool on Lyme disease; The Society of Obstetricians and Gynaecologists of Canada; Lyme-aid for treating Pregnant women; Canadian Association of Schools of Nursing tools for nurses, etc.).

I have included a few of the questions here to give an idea of the direction in which they were going which, in my opinion, was to raise all the things that PHAC has done since the Federal Framework on Lyme Disease and Action Plan was completed. My response was that although a number of items have been completed, very few people know about it as all of the information tends to only be on their websites and/or provided to Lyme advocates to disseminate to their groups. This leaves out a significant number of Canadians totally unaware of what’s going on.

In my opinion, all levels of government need to be “in your face” when it comes to tick awareness and bite prevention so that the number of annual cases do not continue to go up. I also believe health care providers need to be required to educate themselves on Tick-borne diseases.

I advised that a cost analysis should have been the first thing undertaken. Once Canadians are aware of the actual cost of Tick-borne diseases, including the people with undiagnosed and misdiagnosed cases that are leaving their provinces for diagnosis and treatment, or going to alternative/complementary health care providers in order to get well, everyone will finally realize the significant impact our lack of knowledge is having on this country.

Manitoba is the only province that I know of that has undertaken a cost analysis. Based upon the results, they opened a Tick Collaborative Care Service (https://wrha.mb.ca/tick-collaborative-care-service/).

“Given the increasing burden and challenges associated with diagnosing and managing cases of possible late Lyme and/or other emerging tick borne diseases, a provincial Tick Collaborative Care (TiCC) Service has been developed.

This service aims to:

  • streamline, coordinate and improve the care of this patient population
  • enhance collaboration between primary care and specialists
  • serve as a support and education resource for primary care providers caring for this patient population.”

This type of service should be available in every province.

Please consider responding to the survey above and ask them for a copy of the report when it is completed.

Canada needs to do better.