The Center of Excellence

According to El Instituto de Estadísticas de Puerto Rico (IEPR)(The Institute of Statistics in Puerto Rico)  and el Informe de Enfermedades Crónicas (The Chronic Disease Report) 28.8% of the population in Puerto Rico are living with Fibromyalgia. Fibromyalgia (fibro) is a chronic condition that impacts the nervous system, causing widespread pain, central fatigue, problems with memory (fibro fog), and other mental and emotional distress complications. Due to the lack of research on the condition itself, there is also a lack of treatment options, education on how to live with the condition. 

In many people with fibro, the pain can be so severe that it stops them from performing even simple tasks. This activity reduction leads to deconditioning and an overall downward spiral of despair and ill health. Many patients with fibromyalgia have to apply for disability because they cannot work. Others with fibromyalgia are fortunate to suffer from only mild discomfort and stiffness. The fatigue often associated with fibro is also varied from person to person oscillating between hypersomnia and insomnia.

The problem we intend to address is limited access. At this time there are little to no resources that specifically address the needs of the fibro community in Puerto Rico.

What is it?

The Virtual Coordinated Care Program will be a dual-capacity model implemented in Puerto Rico in order to increase the access to Fibromyalgia resources and treatment. 

What does it do? 

It will establish 4 cohorts that will engage in direct and peer-to-peer support.

What processes and technology does it use? 

Participants will utilize zoom technology and google applications to identify and engage with case managers to goal setting that they have for themselves within three months, six months, and five years timelines. During their tenure in the program, they will meet weekly for case management, attend weekly cognitive, behavioral, and social-emotional groups, and nutritional webinars.

The Center of Excellence will impact the 28.8% of people living with fibromyalgia in Puerto Rico. In addition, there will be a communal aspect to care as volunteers will be needed to assist with running groups and dietitians for nutritional webinars. This population is currently underserved as there is little known about fibromyalgia, including how to aptly diagnose and treat the condition. The COE seeks to also provide education for the medical field about the condition as it manifests in participants and key symptoms and occurrences to aid research and future understandings of the condition.

President and founder of the Fibromyalgia Care Society of America Milly Velez has over 25 years of working in the social services field. Diagnosed with fibro in 2007, she has dedicated time and energy to providing resources and fibro education since 2015.  

The Center of Excellence Program has already proven to instill in participants with better eating habits, incorporating more body movement, and mindfulness practices that have led to better pain management. The teams have the passion, dedication, and wherewithal to not only bring this program to fruition, but also ensure its longevity. 

Solve not only provides financial assistance but resources to ensure the success and maintenance of our Solve Solution. While the monetary award would provide us with the financial ability to provide laptops and access to video software, Solve can also provide advice, mentorship, and means to make and maintain connections in Puerto Rico. The COE also seeks to take data from the participants to educate the medical community about fibromyalgia manifestations in participants as well as compile a list of doctors who are competent in the diagnosing and treatment of fibromyalgia. 

From the comfort of the participants' homes, they are able to meet with each other, their case managers, and receive nutritional education. The COE provides the participants with empowerment workshops where they learn interventions that decrease the fibro fog and pain as each group is designed to target social-emotional, cognitive, or behavioral aspects.

Traditionally, fibromyalgia has been cared for solely by the medical community. Our solution is unique as it involves an individual, whole body, whole person approach to care using technology which makes it accessible for people living with the condition --especially those home prone or home bound.

Our impact goals for the year are as follows:

1. To build a strong team that will be committed to creating awareness about the disorder

2. To create awareness about fibromyalgia in at least 20% of the general population 

3. To graduate four cohorts that report a decrease in fibromyalgia pain 

4. To create a standard data system for those with the fibromyalgia condition 

5. To retain funders to support the program

Our impact goals for the next five years are as follows.

1. To at least have created awareness in 80% of the general population.

2. To build a resource and treatment center for fibromyalgia in Puerto Rico. This center will specialize in treating and providing information about fibromyalgia conditions.

3. To have a well-trained group of health workers that will specialize in treating fibromyalgia.

4. To have a well-detailed treatment prescribed for the condition.

We plan to accomplish this by establishing connections in Puerto Rico, publish and distribute educational materials, and establish relationships with local medical professionals.

For individual measurements of success, the COE has a seven-page document called “Journey Map” where we plot the course of the participants’ journey within the program. This map is completed by case managers and participants to collect demographic information and outline their goals for the next three months, six months, and five years. The goals follow the S.M.A.R.T. process-specific, measurable, achievable, relevant, and time-based. Included are risk and protective factors as well. 

We believe in a holistic approach. When participants start the program they will complete a 7-page document collecting demographic information and naming three months, six months, and five-year goals.

The short-term goal is that by joining groups and implementing various interventions (eating, meditating, encouraging better eating habits, yoga)participants will start to notice differences in mood and lowering/increased management of fibromyalgia pain. 

The long-term goal is that participants are able to utilize the tools learned from the cognitive, social-emotional, and behavior groups and nutrition webinars to maintain the management of fibromyalgia pain.

The core technology we will be using are laptops with integrated cameras as well as Zoom or any other video-based platform. In addition, we will utilize Docuwear “document management software providing repository and workflow automation functions, also referred to as enterprise content management or more recently content services(docuwear.com).” With this system, we are able to automatically populate documentation, follow-up appointments, meeting attendance, appointment reminders, and case management notes. Docuware provides technology-based efficiency in program documentation and management.

Our team consists of primarily women (and non-binary person) of color. It is the mission of the Fibromyalgia Care Society of America to demonstrate that Fibromyalgia does not discriminate, but instead impacts people of diverse backgrounds.

Through our hiring process of looking through underserved populations first, especially to those for who English is a second language, we envision an organization filled with people of diverse backgrounds.

Our model consists of a four-pillar program: a holistic approach, case management, nutrition, and aftercare via a virtual landscape. 

Clinical with a Holistic Approach

• Weekly Empowerment Groups

• Clinical Telehealth 1:1 sessions, driven by a Treatment Plan

• Psychotherapeutic Group & Peer to Peer Mentor Support

Case Management

This pillar is critical to supporting clients with reaching short, mid, and long term goals including securing items they need to reach such goals. The Case Manager helps meet needs such as housing, food scarcity, disability benefits, identification documents, health insurance, navigating the medical system, education, employment, spiritual wellness, utilities support, legal assistance, etc. 

Nutrition

Since Nutrition is an essential part of leading a healthy and well-adjusted life, the participants will be provided with webinars conducted by dietitians explaining the importance of an anti-inflammatory diet and showcasing easy meals for folks living with fibro to cook (as it can become overwhelming with inflammation in the hands and feet).

Aftercare

This pillar is one of support, assigned to an ‘Aftercare Specialist’ who follows up with a caseload of clients who have completed the program. The specialist is driven by a Program Design Framework that allows them to continue supporting clients as they practice the skills attained in the Program Phase; also addressing any adversities that arise.

In addition to providing technical assistance, the team at FCSA also plans to identify sustainable grants and donations for the virtual coordinated care program in Puerto Rico.

We have received a $25,000 grants from Healthcare Foundation of New Jersey and are funded by donations and fundraising.