Patients are looking for answers, resources, education and knowledge. The information they seek is scattered all over the internet cumbered by advertisements and categorized by search engine optimization. Patients often are left feeling confused and frustrated in trying to separate truth from marketing. Today we live in a world where patients want to be engaged in their own care. Physicians in general practice need to know enough about a lot of medical conditions to adequately care for their patients and be able to refer out to specialized fields of medicine. There are often limited opportunities to address complex health problems and provide patients the education they need.
Patients often look to the internet for answers, but the information there can be disorganized and unreliable. Wouldn’t it be wonderful if every medical condition had an internet central hub impartial library to house all valid evidence based education, resources and knowledge about the condition with direct links to obtain further content? Alliance of Sleep Apnea Partners (ASAP) would like to create just that for sleep apnea patients, their caregivers and healthcare providers where all the relevant information about sleep apnea could be referenced in one location.
As sleep apnea touches patients from children to seniors, the ASAP site will serve to provide education to individuals, families, the public, schools and communities that will be useful in recognizing the signs and symptoms of sleep apnea and for understanding the potential risks if left untreated. The site would provide education, summarize relevant new research findings, tools for identifying risk and treatment options. The site will also give choices to patients to help them be compliant to their treatment by offering peer support and a neutral listing of FDA and Medical Society approved product offerings as well as others that are patient recommended or may help provide an added level of comfort. Most importantly, the online resource library will be user friendly and simple to navigate.
Alliance of Sleep Apnea Partners (ASAP) is a 501©3 non-profit founded in 2018 by a multi-stake holder group of patients, researchers and healthcare providers. ASAP is an affiliate partner of the Sleep Apnea Patient-Centered Outcomes Network (MyApnea.Org), a PCORI-affiliated program, founded by Susan Redline, MD, MPH who serves on the Board of Directors of ASAP. Sleep Review Magazine featured Dr. Redline in their April 2017 cover article where they noted “Redline has gone beyond the lab (or the computer screen) and engaged patients directly via the Internet with the Sleep Apnea Patient-Centered Outcomes Network (SAPCON). The patient-centered research network went live in 2013. Its goal is to empower patients and inform researchers to treat and research sleep.” * The goal of ASAP is to inform patients and the general public about sleep apnea in an easy to understand way with links to all sources so visitors can gain more knowledge. Most ASAP Board Members participated in authoring a special article published July 15, 2016 in the Journal of Clinical Sleep Medicine. ASAP’s intention is to fulfill on concluding statements made in the article as follows:
“While progress has been made, we all must continue to strengthen collaborative efforts among patients, clinicians, and researchers, and others with a stake in the diagnosis, treatment, and ongoing care for those with sleep apnea. Also essential are the continued improvement and dissemination of patient education and other resources that support the patient and improve outcomes, and are guided by best practices and evidence-based research. The paradigm shift to patient-centered care in sleep apnea can serve as a model for other medical conditions.” *
ASAP is currently run by volunteers with a vested interest. Our wish list would include funding for our 5 Patient Advocate ASAP Board Members to attend the annual Sleep Meeting 2019 in San Antonio June 8-12. It is exciting to note that for the first time ever, American Academy of Sleep Medicine is opening registration to Sleep Medicine Patient Advocates at a significantly reduced registration of only $50. Our Patient Board Members reside all over the US. It is estimated to cost $5000, an average of $1000 per patient, to fund travel expenses and registrations for our patient leaders.
Beyond our immediate needs for development of community outreach and funding for Sleep Meeting 2019, ASAP, we would add to our wish list funding for two staff members to initially administer the intent of the organization until we are self-sustaining.
Wolski, C.A. (2017) Big Data Hits the Big Time: Susan Redline, MD, MPH, Sleep Review, the Journal for Sleep Specialists, http://www.sleepreviewmag.com/2017/04/big-data-susan-redline-md/
Patient Partnerships Transforming Sleep Medicine Research and Clinical Care: Perspectives from the Sleep Apnea Patient-Centered Outcomes Network
Susan Redline, Si Baker-Goodwin, Jessie P. Bakker, Matthew Epstein, Sherry Hanes, Mark Hanson, Zinta Harrington, James C. Johnston, II, Vishesh K. Kapur, David Keepnews, Emily Kontos, Andy Lowe, Judith Owens, Kathy Page, Nancy Rothstein, for the Sleep Apnea Patient-Centered Outcomes Network
J Clin Sleep Med. 2016 Jul 15; 12(7): 1053–1058. Published online 2016 Jul 15. doi: 10.5664/jcsm.5948
PMCID: PMC4918988 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4918988/
Thank you for your consideration!