Life Resource Center

In the US and Puerto Rico, more than two hundred and fifty thousand individuals are living with neuromuscular disease, and with the advent of COVID-19, social isolation has become an even greater concern for individuals living with a disability, such as those living with NMD. A recent article, from the American Psychological Association, shared that pandemics affect the mental health of marginalized populations, such as those with a disability, more than the general population. According to the World Economic Forum, “the coronavirus pandemic has brought into sharp focus the critical importance of digital communication…in allowing those staying at home to remain connected with friends and family, deterring loneliness.” For this reason, as well as many others, it is a critical time to establish and build a community of individuals with similar life experiences. The Life Resource Center will provide a unique opportunity for the neuromuscular community to come together in a single place and login and experience a Virtual community that will provide real-time and personalized information such as clinical trials, access to community resources and a nationwide network of individuals with shared experiences. 

With the Life Resource Center, we plan to make considerable progress in addressing the information gaps as well as the challenges of social isolation as outlined above. The Life Resource Center will supply a virtual engagement and learning opportunity. The Portal will create five important connections to the various populations within the neuromuscular community:

1) Community to Community: A social network for caregivers and patients alike to connect and engage in a safe and secure space to share their experiences.

2) Community to Clinician: This will allow individuals within the NMD community to communicate, in real-time with clinicians to engage in dialogue about current treatments, care and current and active clinical trials for neuromuscular diseases.

3) Community to MDA: To connect those living with neuromuscular diseases and their caretakers to the MDA staff to allow flow of information on the services and resources available through MDA.

4) Clinician to Clinician: Ensuring the clinicians that provide care to the NMD community can share, collaborate and communicate current best in class care practices and data on the impact and effect of clinical trials and treatments.

5) Clinician to MDA: Engaging with clinicians in real time to ensure that MDA is providing current and up to date information to then be disseminated to the NMD community.

We will provide an online platform that will utilize various types of technologies to allow for individuals with NMD to connect with each-other and to access and utilize up to date resources. This virtual space will be the "go to” for:

• Making an impact on the community – strength in numbers – by increasing patient acquisition.
• Provide a space for peer support and engagement to learn from others who have been there.
• Grant access to on-demand content and the just-in-time resource library.
• Provide a personalized, white glove experience to the patient’s journey.
• Enhance community data-driven decision making.
• Elevate the community and clinician community experience.

The Life Resource Center will serve more than 250,000 individuals living with neuromuscular diseases but it will also serve the caregivers and clinicians who provide care and services to those with NMD, through their journey with NMD. Results from the MDA OneVoice study, conducted in 2018, showed that 76% of the NMD community never participated in a clinical trial. When asked if they were interested in participating in a clinical trial, 63% of those individuals indicated they would be interested. This is only one example of how the NMD community is being underserved and how important it is to ensure information on current and active clinical trials, current treatments, and disease management is readily available and up to date for the NMD community.

Moreover, we are truly at the precipice of changing the course of these diseases as new treatments and therapies are being developed and approved at a record pace. When MDA first began its work, a child diagnosed with Duchenne muscular dystrophy (DMD) was unlikely to live past his early teen years. MDA’s tireless efforts to enhance medical care including finding better diagnostic techniques for earlier diagnosis and identifying the best approaches to managing symptoms, as well as our significant role in treatment discoveries, has allowed young people living with DMD now to live well into their 30s and even 40s. We are now seeing our young people graduating college, entering the workforce, getting married and building families – milestones that were out-of-reach just thirty years ago. To this end, it is more vital than ever that young adults access support and resources to inform their transition into adulthood. 

The teams within the Healthcare Services umbrella and IT at MDA are well positioned for supporting the design and execution of the delivery of the Life Resource Center to the neuromuscular disease community. The Healthcare Services team directly engages and supports the MDA community by email, phone and in-person opportunities. By providing an interactive, virtual platform, the team will be able to broaden their scope of support and allow the community to self-serve outside of business hours with MDA, MDA’s Care Centers and Affiliates and community partners. MDA is the convener to the community in access to 150+ MDA’s multidisciplinary Care Centers across the US and Puerto Rico, directly providing care to the neuromuscular disease community.

This solution came out of the result of the MDA OneVoice study, which surveyed the neuromuscular community. According to the MDA OneVoice study, MDA is considered a “go-to” resource for individuals and families affected by NMD. In fact, 75% of those surveyed stated they use MDA to obtain information on issues related to their NMD, followed to a lesser extent by health care providers at 66% of those surveyed. With this data, MDA carries the important, but heavy, weight of providing accurate and meaningful information to the NMD community. The modality for providing this information is also significant. 70% of the individuals surveyed shared that they have visited MDA’s website and data collected by MDA shows an average of 600,000 unique visits to our website each month. This means that our community is primarily accessing information online. Additionally, we receive well over 30,000 inquiries to our Healthcare teams via email and phone. These inquiries vary from questions about MDA’s services to requests for information about a specific disease, to assistance connecting with community supports such as government benefits, health insurance, accessible housing, and employment training.

COVID-19 has also reaffirmed the need to swiftly deliver updated information. The Council of State Governments asserted this year that individuals living with a disability must have access to credible information to inform them immediately of changes to systems that provide critical services such as home health care as well as information around disease prevention and emergency preparedness. As a critical source for information, MDA plays a significant role in ensuring individuals living with NMD are informed during crises such as a pandemic or natural disaster. Individuals living with NMD are especially susceptible to COVID-19 and its severest outcomes due to the pulmonary and cardiac issues that already accompany most NMDs. The onset of this pandemic and its everchanging impact on daily living, has forced us to reevaluate how we are disseminating information to this very vulnerable population.

As we build this solution to provide more real-time information to the NMD community we are excited about the opportunity to collaborate with and learn from others and from MIT faculty as it will be incredibly beneficial to the scope and impact of the Life Resource Center and will help us achieve our goals faster, by helping us find the right technology solutions to ensure this solution provides a robust and interactive platform for sharing information.

The MDA Life Resource Center is innovative in that no other comprehensive, broad-spectrum, and interactive online platform exists for the NMD community. Social media offers various groups and some disease-specific organizations offer community chat and curated content through email, but this Virtual Community Center will be inclusive of all NMDs, widening the reach and depth of impact. MDA has always taken a big-picture approach to NMD as we know that learnings in one disease can often be applied to achieve progress in many diseases. Additionally, the Virtual Community Center will be moderated by MDA staff who are well-versed in NMD, giving the platform credibility and professionalism beyond what many social media groups currently provide. The diversity of information and resources shared will also set this program apart. Robust and real-time information will be shared around all aspects of the human condition from medical and scientific information to practical resources about daily living and mobility, to information around employment, tips to support physical and mental health, and opportunities to connect socially to share ideas and experiences.

The impact of the Life Resource Center will be determined by achieving the following outcomes within the first 180 days of the platform being available to individuals:

• Total logins: 6,000

• Case creations: 600

• Login rate: Average of 6 logins per user

• Unique users: 300

The first year of the platform being available to individuals:

• Total logins: 8,000

• Case creations: 1000

• Login rate: Average of 15 logins per user

• Unique users: 500

Five years of the platform being available to individuals: 

• Total logins: 52,000

• Case creations: 5000

• Login rate: Average of 19 logins per user

• Unique users: 650

These metrics will confirm the need for the project as well as its sustained usefulness. Data will be tracked and evaluated every 60 days for the first six months of the project. Additional data will be collected through simple surveys offered to users every 60 days to evaluate the usefulness of specific content, ease of use and to understand additional areas of need and interest. We will also collect and evaluate data by groups such as age, disease, and geographic region to understand the user profiles logging in the most, and more importantly, the user profiles for which there are gaps in usage. This data will help us understand how and where to focus our outreach. It will also allow us to fail fast and pivot content and support to meet the needs and interests of our users more.

Inputs

•Funding the program development and operations

•Healthcare Team staff to oversee planning and implementation

•Partnership with internal and external stakeholders for platform development

•Cross-departmental input for content development

•Evaluation work group to assist with planning and develop a system for data collection, integration with Salesforce and evaluation

Activities

•Train staff to develop and deliver real time content, on-demand resources, community forums, etc.

•Recruit patients, care givers, friends, volunteers, advocates, family, clinicians, etc.

•Provide single-platform to unite NMD community, access content and participate virtually

Outputs

•Number of staff trained

•Number of participants recruited and served

•Number of resources/sessions

•Number of session hours provided

•Number of engagement opportunities

Outcomes

•We expect the Life Resource Center will improve access to information, limit connection barriers with the NMD community, empower the community to self advocate

•We also expect to increase engagement between the patient/caregiver community, clinicians, and MDA

Impacts

•The desired long-term impacts of the program is to increase meaningful relationships within the NMD community

•Empower NMD to self-learn, advocate and connect

•Increase engagement with MDA and the NMD community

Since this solution is still a prototype no specific technology platforms have been identified but we are working diligently to do research and test technology that will provide the following functions for the Life Resource Center:

• Messaging Features: For live chatting among NMD community members.
• Bot Feature: To allow for quick and responsive support.
• Live Presentations
• Video Uploads
• Social Profiles
• Database Support

At MDA, a diverse, dynamic and inclusive culture underlies the success of our association. As an organization that fundamentally supports individuals and families who are affected by the structural inequities related to disability, MDA understands that diversity and inclusion widens our vision and mission. It helps our employees achieve their professional objectives to support the people we serve.  Different backgrounds and characteristics, such as race, ethnicity, gender, disability, culture and sexual orientation bring innovative viewpoints and skills to a company. Integrating diversity and inclusion initiatives across the organization is essential to our business strategy and long-term success. 

Therefore, MDA has established resources and diversity objectives, that are measured through annual reporting, to help ensure we recruit and maintain a diverse talent pool. Objectives include:

• Expanding and embracing diversity across our organization.
• Strengthening our partnerships with diverse national and local community organizations.

To successfully achieve these objectives, we also offer internal staff training and development opportunities that will help drive our organization’s culture of inclusion. Training includes:

• Diversity 
• Affirmative Action
• Working with People with Disabilities
• Leadership/Manager Training Workshops

Individuals living with neuromuscular diseases are involved with MDA on many levels, from participation in the National Board of Directors, to staff employed on MDA’s fundraising and program teams, to volunteer speakers, advocates and our National Ambassadors. We frequently gather insights from the neuromuscular disease community through surveys, panel discussion, and advisory committees.

Key Partnerships

•NMD community (ie. patients, caregivers, clinicians, etc.)

•MDA staff

Value Proposition

•Provide NMD community opportunity to connect, educate, empower with each other and MDA

Customer Relationships

•MDA brand and community dedication

Customer Segments

•Patients, caregivers, family, advocates, volunteers, clinicians, staff

Key Resources

•MDA brand, content and community

Channels

•Life Resource Center platform

•Social media

•MDA website

•Direct mail

•Brand awareness

Cost Structure

•Platform development, implementation and maintenance in addition to employees salaries

Revenue Streams

•Sponsorships, fundraising initiatives 

The Life Resource Center is an integral part of MDA’s long-term strategic plan to leverage technology to transform the lives of individuals living with NMD. To sustain this program as well as others, MDA is engaged in year-round efforts to raise funds through direct marketing, consumer engagement programs (such as point-of-sale programs at retail stores), community engagement programs (such as MDA Muscle Walk events and MDA Team Momentum), distinguished events (such as galas and golf tournaments), fundraising events (such as Fill the Boot, which is run by fire fighters across the country), the return of the iconic MDA Telethon, corporate partnerships, foundation grants, and planned and major giving. Once the pilot has proven successful, we will create additional groups as needed for other NMDs and populations. We will also expand forums, add additional resources, directly facilitate a variety of virtual social opportunities, and provide support groups. Ultimately, the Life Resource Center will expand to support not only individuals and families affected by NMD, but also MDA Care Center clinicians, researchers, volunteers, and donors. We believe this project is scalable and that it will be a vehicle to address additional gaps in service and information that we find as the NMD landscape changes over time. As a pioneer in NMD and, more broadly as a pioneer in health advocacy, MDA’s Life Resource Center is poised to be a model for other nonprofits focused on supporting specific patient populations.