A Vision for the Community Pain Center
The vision for the Community Pain Center, a revolutionary destination website created for the chronic pain community, began 20 years ago when the CEO, Lynne Kennedy Matallana, was first diagnosed with fibromyalgia (FM). She had been bedridden for two years after surgery to treat endometriosis. Wracked with pain and fatigue, she saw 37 doctors before finally receiving an FM diagnosis. With this new information, Lynne set out on a quest to find out as much about her condition as possible, but discovered that little information and support was available.
This led her to focus what little energy she had on creating a solution to this problem. By 1997, she and Karen Lee Richards, a fellow FM sufferer Lynne met in an online chat room, formed the National Fibromyalgia Association (NFA). Guided by the mission statement: “To develop and execute programs dedicated to improving the quality of life for people with fibromyalgia,” the NFA started out in a makeshift office in Lynne’s attic and over the years grew to be the most recognized and influential FM organization. The NFA directly assists approximately 1.2 million people each year in developing skills to regain control of their lives, reduce isolation, and restore hope.
suffering with fibromyalgia and other chronic pain conditions.
In the early days of the NFA, many people with FM had few resources for information and support, and health care providers had very little education about the illness. Many who suffered with the life-altering symptoms of the disease were not diagnosed properly, or at all, let alone treated effectively. Lynne headed up a team of 25 volunteers and NFA employees whose goal was to raise awareness of fibromyalgia, which then carried with it the stigma of being a “wastebasket diagnosis,” or just depression, or even an imaginary disease. Their goal, in addition to providing support and hope for so many who were hopeless to find relief from their pain and despair, was to raise money for research, so that doctors could better understand this complex and mysterious condition, and be able to diagnose and treat their patients.
Through the many years Lynne volunteered as president of the NFA, she helped raise over $20 million for the organization’s worldwide advocacy programs, which included awareness campaigns, training for support group leaders and advocates, continuing medical education for health care practitioners, organization of scientific symposia, attendance at government meetings, participation in major research studies, and publication of the first fibromyalgia-focused magazine, which reached a circulation of approximately 500,000 and was carried by Barnes and Noble. Among many other extraordinary outcomes, the NFA’s advocacy efforts and assistance to researchers eventually led to three drugs being developed for the treatment of fibromyalgia, as well as widespread awareness of the disease by health care professionals and the general public.
Despite the many great accomplishments of the NFA, Lynne couldn’t help but think that there had to be more she could do to help people suffering with fibromyalgia and other chronic pain conditions.
She understood how hard it can be to reduce chronic pain when patients aren’t aware of the many treatment options and lifestyle changes that can be beneficial beyond the scope of traditional Western medicine. Lynne knew that the only way she could reach over 100 million Americans living with chronic pain, not to mention millions more worldwide, was via the Internet. And how was she to help these millions of people feel better once she reached them?
Her plan was to build an all-inclusive website that those affected by chronic pain could use to self-manage their health, including tools and resources to help them improve their physical, mental, emotional, and spiritual wellbeing. A recent study reports that chronic pain patients using online self-management tools in addition to their standard care had significantly greater improvements in their pain intensity and physical functioning than those receiving only their standard care. The online self-management program used in the study included educational modules focused on patients learning about their pain condition, skills to facilitate symptom management, and ways to implement lifestyle changes to manage their pain condition.
This study, in addition to other findings that show the advantages of having the support of a community, using technology to improve health outcomes, and the benefits of an integrative or holistic approach to managing health, all inspired Lynne to create the Community Pain Center (CPC). But her desire to help people in pain didn’t stop at the patient level. She knew that caregivers, the medical community, non-profit organizations, health care industry leaders, and governments must all be involved in order to create significant and lasting change. Rising health care expenditures, diminished quality of patient care, and divisions caused by self-interested parties were only making it more difficult for patients to feel better.
Yes, this is an extremely ambitious goal for the leader of the NFA to pull off. How can she do both? Well, now that the NFA is being directed by other capable leaders, Lynne can focus on helping more people through the CPC. But this isn’t an endeavor that can be managed and funded in the same way as the NFA. The high costs of building such a complex and all-inclusive web portal containing all the tools and resources to realize Lynne’s vision can’t be put together with donations and fundraising events. In fact, to begin the process of building the CPC into the comprehensive website it is designed to be, Lynne and her partners have invested everything, including thousands of hours of unpaid work; not to mention, sacrificing countless hours of sleep. Yet the CPC has only just begun to sprout. To nurture and grow the CPC, it must be based on a business model that funds itself through membership fees, advertising, and sponsorships.
According to pre-market surveys of 21,921 pain patients between 2005 and 2012, people in pain are already spending an average of $5,000 out-of-pocket on pain treatments such as OTC products, prescriptions, health care advice, and complementary and alternative treatment modalities. Responders expressed a willingness to pay between $40-50 per year for the CPC’s offerings. The surveys showed that 97% had a high interest in the types of products and services offered by the CPC, such as access to evidence-based self-help programs, assistance finding local health care practitioners, and access to quality pain related products and services.
High-quality videos, articles by experts, doctor-patient webinars, interactive tools to track sleep and symptoms, HIPAA-compliant electronic health records storage, continuing medical education programs, campaigns to assist non-profit organizations, advocacy training and organization, searchable directories of health services providers, special offers and discounts on products and services, surveys to facilitate research, opportunities to participate in clinical trials, and so much more will be available to members of the Community Pain Center. These features and more will benefit everyone touched by chronic pain. Lynne’s vision spans far and wide, but also includes the input and feedback of members, for whom the CPC is meant to serve.
Since the Community Pain Center has just launched its first phase of website development, Lynne asks members and visitors to share their ideas about what they want the CPC to become, as well as provide feedback on what is already there. Just as it takes a village to raise a child, it’s going to take a community to create what has been envisioned for this destination website, so that it will include the best information, self-management tools, and resources to improve the health and wellbeing of those affected by chronic pain. So, let us know what you think of the Community Pain Center.
A free trial membership with limited site access is being offered through September 30, 2015. Beginning October 1, 2015, annual membership will be $50, but now through September 30, 2015, you can become a founding member for $25, or upgrade to a lifetime membership for $100.
In an effort to raise awareness and motivate the pain community to come together, the CPC is promoting 100K Against Chronic Pain, a campaign designed to bring in 100,000 members by the end of National Pain Awareness Month (September). A free second-year membership will be given away to the first 25 and then every 100th person to sign up for an annual membership. Click here to become a member.