I was recently asked to give a short presentation about CPCSSN. This is not an unusual request, a number of us within CPCSSN give talks, present posters, conduct technical workshops, even webinars.
So what makes this request unique?
It is to be 12 minutes and my audience is the general public. This means no research, technical or medical jargon, and no acronyms. You can be sure however, I will make an exception when referring to CPCSSN. Saying “Canadian Primary Care Sentinel Surveillance Network” takes 5 seconds, “CPCSSN” less than 1!
I need to fit a complex topic into as few words as possible. Capturing years of work and investment in a short time slot is not without its challenges and on top of that I had to grab their attention and keep it.
In pursuit of finding an angle I find myself revisiting CPCSSN’s roots, its beginnings.
Eight years ago a group of 30, most of us family medicine researchers, gathered at a workshop in Kingston. The goal was to evolve the concept of establishing a national network of primary care practice-based research networks or PC PBRNs. [An acronym!] Together we would support each others’ work and the work of other primary care and public health researchers.
This national network would have the capacity to respond to information needs about the provision of primary care across Canada. It would be positioned to assist health care practitioners.
We envisioned the coordination of primary care research groups to answer questions that require large sample sizes or assessment of regional variation. We pictured a data system to support this, a system for disease surveillance and health care practice improvement.
We believed in the possibility of influencing the prevention and management of chronic disease for populations across the country. We wanted to influence the optimization of primary care across the service delivery spectrum. We wanted to make a difference for the overall health of Canadians.
A small team of us worked to find funding for our initiative. In 2008, we received a grant for a two-year feasibility study to test our ideas, our vision. We became known as CPCSSN. The feasibility study’s success lead to a 5-year, multi-million dollar project that has supported the creation of an award-winning infrastructure. Four years later we have defined and are building our niche, our value and our capacity. We are attracting international attention along the way!
Today CPCSSN is a national network of primary care and public health researchers, health care providers, and talented staff working together to make a difference in health care practice and policy through surveillance and research. CPCSSN is an innovator, creating a surveillance system with a new source of data. We are generating knowledge for improved health care for patients at the practice level and for policy makers at the system level.
In a nutshell, we use information technology and a privacy architecture to extract, transform and translate patient health data from the electronic medical records of practitioners who are dotted across the country. These care providers make up CPCSSN’s most valued sentinel surveillance network.
CPCSSN is scrupulously careful with the data. We protect the confidential information provided by individuals to their physician in the context of care. It is de-identified and housed in a secure, central location. It is analyzed for information about chronic diseases, their prevention or delay, and management. The data is also used to create reports that go back to the participating sentinel physicians. The feedback reports serve as a practice improvement tool.
I can say that we have built a strong foundation. Our vision is becoming a reality. We have accomplished much but have only scratched the surface of possibilities.