Nancy’s Nook Facebook group was begun several years ago by me, Nancy Petersen, and I have been assisted very generously by several volunteers over the years. Those volunteers have devoted much time, knowledge, and effort to amass endometriosis education and keep the group running. However, much more work is needed than volunteers can give. The Facebook group is sustaining over 120,000 members regularly. Some come, do their learning, and move on, while others stay to continue to learn and help others. As the Facebook group has continued to grow over the past few years, it was noted that something accessible to more people was needed. Members of the Facebook group asked for a way to access the files of information in a more efficient manner, and the admins of the group wanted their work to remain to help others. With a lot of assistance, the website (nancysnookendo.com) was created in order to not only maintain some of the content of the Facebook group, but to bring new research and new content to us regularly.
Dr. Andrea Vidali noted recently:
“One of the biggest problems that we have in medicine today is a complete disconnect between the physician’s knowledge base and the patients experience and knowledge base. With the advent of crowdsourced knowledge, it now turns out that for some medical conditions, and endometriosis is a very good example, most of the patients have a knowledge base that is greater than the average physician.”
Because evidence-based education is so critical to patients making effective treatment choices, the administrators in Nancy’s Nook will be looking for ways to keep the website viable, current, and bring new content and research. We have no revenue source for that yet. If we are to push the agenda of education, research, evidence-based care, opportunities for self-directed learning for all who come after we are no longer here, we will have to find a way for it to become self-sustaining. Once that happens there will be opportunities for more content in different languages, more interactive teaching, and a variety of other ways to meet patients’ needs and help them make better treatment decisions. It will require some paid staff to accomplish these education goals to keep the website running and current.
What has been developed for the Facebook group has been from generous volunteers; however, as the volunteer administrators move on, age out or whatever, we need a stable source of information for patients to better understand this disease and not take 9 years and multiple treatment failures before diagnosis and relief. The future of the website will need financial support in order to continue to help others. We have hired a team of website developers and nurse researcher to maintain the website and to develop new content and bring the research for all of us to see and follow. We feel the website is important as there is no guarantee Facebook will continue on in a way patients can access information.
For the admins and myself, in many ways it has been a labor of love born out of our own experiences with the disease and a desire for other patients to not have to struggle with the system while seeking care that has historically led to one treatment failure after another. But our commitment to the future needs security beyond volunteerism to ensure continuity and relevance of the website. It is critical that we have the ability for patients to learn, to recognize red flags (as in treatment that does not work) long term. It will take support, unfortunately from those who need the information, as the industry seems unable to identify its shortcomings and failures.
Watch this website and Nancy’s Nook Facebook page for opportunities to help support the continuance of these educational opportunities. Margaret Mead, PHD, cultural anthropologist (1904-1978) once was quoted as saying:
“Never doubt that a small group of thoughtful committed people can change the world. Indeed it is the only thing that ever has.”
You may have an opportunity to help with the change as we look for ways to support quality, evidence-based information well into the future and perhaps beyond the life span of Facebook.
Nancy Petersen, RN, Retired
Founder, Nancy’s Nook Endometriosis Education Facebook