Aortic Health: Patient-Centered Education and Support Initiative

Rock from the Heart

Heart valve disease, aortic aneurysm, and aortic dissection are serious cardiovascular conditions that can lead to severe health complications and mortality if not properly diagnosed and managed. These conditions often go undetected until they reach a critical stage, largely due to a lack of awareness and insufficient education among the general public and even healthcare providers. This delay in diagnosis and treatment significantly increases the risk of adverse outcomes, including heart failure, stroke, and sudden death.

Scale of the Problem

Globally, millions of people are affected by these cardiovascular conditions:

• Heart Valve Disease: It is estimated that over 13 million people worldwide suffer from heart valve disease. In the United States alone, about 5 million people are diagnosed with heart valve disease each year.
• Aortic Aneurysm: Approximately 200,000 cases of aortic aneurysm are diagnosed annually in the U.S., with the condition affecting around 1-2% of the population globally.
• Aortic Dissection: Although rarer, aortic dissection is a critical condition with an incidence rate of 3-4 per 100,000 individuals per year worldwide. It is associated with high mortality rates if not treated promptly.

In the communities we serve, particularly in areas with limited access to specialized healthcare, the impact of these conditions is exacerbated. Many individuals lack the knowledge and resources to seek early intervention, leading to late-stage diagnoses when treatment options are more limited and less effective.

Contributing Factors

Several factors contribute to the challenges associated with these cardiovascular conditions:

• Lack of Awareness: Many people are unaware of the symptoms and risks associated with heart valve disease, aortic aneurysm, and aortic dissection. This ignorance leads to delays in seeking medical help.
• Limited Access to Education and Resources: In many communities, particularly underserved areas, there is a significant gap in the availability of educational materials and support systems.
• Healthcare Inequities: Disparities in healthcare access and quality further compound the problem, particularly for low-income and minority populations.
• Inadequate Screening and Early Detection: Routine screening for these conditions is not universally practiced, resulting in missed opportunities for early diagnosis.

Relevant Statistics

• Heart Valve Disease: According to the American Heart Association, heart valve disease affects 2.5% of the U.S. population, with prevalence increasing with age. The mortality rate is significant, particularly in older adults.
• Aortic Aneurysm: The Centers for Disease Control and Prevention (CDC) reports that aortic aneurysms were the primary cause of 9,923 deaths in the U.S. in 2018, highlighting the condition's severity. Aortic Dissection: The International Registry of Acute Aortic Dissection (IRAD) indicates that untreated acute aortic dissection has a mortality rate of 1-2% per hour within the first 48 hours, underlining the critical need for prompt diagnosis and treatment.

Rock from the Heart’s comprehensive approach to combating heart valve disease, aortic aneurysm, and aortic dissection focuses on education, support, advocacy, and community engagement. Our multifaceted program is designed to address the root causes of delayed diagnosis and suboptimal treatment outcomes, ensuring that patients and their families are empowered with knowledge, resources, and a supportive network.

1. Raising Awareness

Awareness is the first step towards prevention and early diagnosis. Our awareness initiatives include:

• Public Campaigns: Leveraging social media, local news, and community events to spread information about the symptoms, risks, and importance of early detection of heart valve disease, aortic aneurysm, and aortic dissection.
• Community Outreach: Collaborating with local organizations, schools, and businesses to disseminate educational materials and host informational sessions. We also participate in health fairs and community gatherings to reach a broad audience.

2. Providing Comprehensive Education

Education is central to our mission. Our educational initiatives encompass:

• Webinars and Online Courses: For those unable to attend in person, we offer virtual opportunities. Our online courses provide in-depth knowledge on heart valve disease, aortic aneurysm, and aortic dissection, accessible from anywhere.
• Resource Library: Our website hosts a vast array of resources, including articles, videos, infographics, and downloadable guides. These materials are curated to be easily understandable and comprehensive, ensuring that patients and caregivers have access to reliable information at their fingertips.

3. Annual "Rock from the Heart" Event

Our flagship event combines education with entertainment to raise awareness and funds:

• Live Music Performances: Featuring popular bands and musicians to attract a wide audience, our event uses the universal appeal of music to draw attention to our cause.
• Informational Sessions: Concurrent with the performances, we host sessions where experts discuss the latest advancements in the diagnosis and treatment of heart valve disease, aortic aneurysm, and aortic dissection.

4. Partnerships and Collaborations

Collaboration enhances our impact. We partner with:

• Healthcare Providers: Working with hospitals, clinics, and medical professionals to ensure that our educational materials are integrated into patient care.
• Non-Profit Organizations: Collaborating with other non-profits focused on cardiovascular health to amplify our message and resources.
• Corporate Sponsors: Engaging with businesses to sponsor events and programs, increasing our capacity to reach more individuals.

5. Evaluation and Improvement

Continuous improvement is key to our effectiveness. We:

• Collect Feedback: Regularly gather feedback from program participants to assess the impact and identify areas for improvement.
• Track Outcomes: Monitor key metrics such as increased awareness, early diagnosis rates, and patient outcomes to measure our success.
• Adapt and Evolve: Use data-driven insights to refine our programs, ensuring they remain relevant and effective in addressing the needs of our community.

By addressing the multifaceted challenges of heart valve disease, aortic aneurysm, and aortic dissection through these comprehensive strategies, Rock from the Heart aims to significantly improve patient outcomes and enhance the quality of life for those affected by these conditions.

Our solution primarily serves individuals diagnosed with or at risk for heart valve disease, aortic aneurysm, and aortic dissection, as well as their families and caregivers. The target population includes:

1. Patients: People of all ages and backgrounds who are diagnosed with heart valve disease, aortic aneurysm, or aortic dissection. This group often faces significant health challenges, including limited mobility, reduced quality of life, and high risk of complications or mortality if these conditions are not managed effectively.

2. Families and Caregivers: Those who provide care and support to affected patients. This group includes spouses, children, parents, and other relatives who often experience emotional, financial, and physical burdens due to their caregiving responsibilities.

3. Underserved Communities: Individuals in rural or low-income areas, minority populations, and those with limited access to healthcare resources. These groups are particularly vulnerable due to healthcare disparities, lack of awareness, and inadequate access to specialized medical care.

Our comprehensive program will significantly impact the lives of these individuals by addressing their specific needs through education, support, advocacy, and community engagement.
1. Enhancing Knowledge and Awareness

• Patients: By providing accessible and accurate information about heart valve disease, aortic aneurysm, and aortic dissection, we empower patients to recognize early symptoms, understand their condition, and make informed decisions about their healthcare. This leads to earlier diagnosis, better management of the disease, and improved overall outcomes.

• Families and Caregivers: Education programs equip caregivers with the knowledge they need to effectively support their loved ones. This reduces anxiety and stress, enabling caregivers to provide better care and maintain their well-being.

• Underserved Communities: Our targeted outreach efforts increase awareness in communities with limited access to healthcare information. This helps bridge the knowledge gap and encourages individuals to seek timely medical attention.

2. Providing Emotional and Practical Support

• Patients: Support groups and peer networks offer a safe space for patients to share their experiences and receive emotional support. This helps reduce feelings of isolation and promotes mental well-being.

• Families and Caregivers: Support services for caregivers provide them with much-needed respite and resources to manage their responsibilities effectively. This includes connecting them with other caregivers who understand their challenges.

3. Advancing Patient Outcomes

• Patients: Through education, support, and advocacy, we aim to improve the overall quality of life for patients. This includes better management of their condition, reduced hospitalizations, and lower mortality rates.

• Families and Caregivers: Improved patient outcomes directly benefit families and caregivers by reducing the physical, emotional, and financial burdens associated with chronic illness management.

4. Building a Supportive Community

• Patients and Caregivers: Creating a strong network of support among patients, caregivers, and healthcare professionals fosters a sense of community and belonging. This network provides continuous support, shared experiences, and collective advocacy, which strengthens the overall impact of our program.

By addressing the unique challenges faced by patients, families, and underserved communities, our program aims to improve their quality of life, enhance their health outcomes, and build a stronger, more informed, and supportive community.

Established Model and Proven Impact of Rock from the Heart

Why We Selected Our Current Stage

Rock from the Heart is proud to be in its seventh year, with a proven and established model that continues to grow and adapt. Our journey began with a singular focus on raising awareness and providing support for those affected by heart valve disease, aortic aneurysm, and aortic dissection through our annual event in the Twin Cities. Since then, we have expanded our reach and impact, demonstrating our ability to innovate and respond to changing circumstances, such as the COVID-19 pandemic.

Accomplishments and Proven Impact

1. Expanded Reach with Additional Events

In 2022, we successfully expanded our presence by introducing a second annual event in Fargo, in addition to our established Twin Cities event. This strategic expansion allowed us to reach new communities and offer our programs and support services to a broader audience, effectively doubling our outreach and impact.

2. Adaptation During COVID-19

The COVID-19 pandemic presented unprecedented challenges, but we quickly adapted by pivoting to a fully virtual event model. This transition ensured that we continued to provide essential education and support despite the constraints of the pandemic. Our virtual events included live-streamed presentations, interactive Q&A sessions, and virtual support group meetings, ensuring continuous engagement and support for our community.

3. Hybrid Event Model

Building on our experience with virtual events, we have adopted a hybrid event model that combines in-person and live-streamed elements. This approach maximizes accessibility and inclusivity, allowing individuals who cannot attend in person to participate and benefit from our programs. Our hybrid model has proven successful in maintaining high levels of engagement and participation, regardless of geographical or logistical constraints.

4. Educational Workshops and Symposiums

We have hosted numerous patient focued symposiums, featuring leading experts in cardiology and cardiovascular surgery. These events provide in-depth knowledge on heart valve disease, aortic aneurysm, and aortic dissection, covering topics such as early detection, treatment options, and post-treatment care. Our live-streamed and recorded sessions ensure that this valuable information remains accessible to a wider audience beyond the event dates.

5. Support Groups and Peer Networks

We connect people with both in-person and virtual support groups, offering emotional support and practical advice to patients and caregivers. These support groups have been instrumental in creating a sense of community and reducing feelings of isolation among participants. The peer networks formed through these groups provide ongoing support and connection, enhancing the overall well-being of our beneficiaries.

6. Number of Beneficiaries Served

Over the past seven years, Rock from the Heart has directly impacted the lives of thousands of individuals through our events, educational programs, and support services. Our expanded reach and hybrid model have allowed us to engage with an even larger audience, ensuring that our mission continues to resonate and make a difference in the lives of those affected by these serious cardiovascular conditions.

In summary, Rock from the Heart has built and tested a robust and adaptable model that effectively addresses the needs of our target population. Our accomplishments over the past seven years demonstrate our ability to innovate, expand, and maintain relevance, ensuring that we continue to provide essential education, support, and advocacy for individuals affected by heart valve disease, aortic aneurysm, and aortic dissection.

Rock from the Heart’s solution is innovative in several key ways, offering a fresh and comprehensive approach to addressing heart valve disease, aortic aneurysm, and aortic dissection.

1. Hybrid Event Model

Our hybrid event model combines the benefits of in-person engagement with the extensive reach of virtual platforms. This approach ensures inclusivity and accessibility, allowing individuals from diverse geographic locations and varying levels of mobility to participate in our programs, breaking down barriers to accessing critical information and support.

2. Integrated Support System

We offer an integrated support system that combines education, emotional support, and advocacy. By creating a comprehensive resource library, facilitating peer support groups, and advocating for better healthcare policies, we address the multifaceted needs of patients and caregivers. 

3. Community-Driven Expansion

Our strategic expansion to new locations, such as the introduction of our Fargo event, demonstrates a scalable model that can be replicated in other communities. This community-driven approach ensures that our programs are tailored to the specific needs of local populations, increasing their relevance and impact.

4. Engaging and Informative Events

Combining education with entertainment, such as live music performances at our flagship event, attracts a broader audience and raises awareness in a unique and engaging manner. This innovative approach helps destigmatize cardiovascular conditions and encourages community involvement.

5. Adaptation and Resilience

Our ability to pivot to a fully virtual model during the COVID-19 pandemic and maintain high levels of engagement showcases our resilience and adaptability. This flexibility ensures that we can continue to provide essential services regardless of external challenges, setting a precedent for other organizations in the space.

Broader Positive Impacts

• Encouraging Collaboration: Our success in building partnerships with healthcare providers, non-profits, and corporate sponsors illustrates the power of collaboration. This encourages other organizations to form similar alliances, amplifying the collective impact on cardiovascular health.
  

• Innovative Educational Techniques: Our engaging and informative events, combining entertainment with education, can inspire new methods of health education. This approach can be adopted by other health organizations to make their educational efforts more appealing and effective.

Rock from the Heart is poised to change the market and landscape by:

• Driving Technology Integration: By effectively utilizing live-streaming and on-demand content, we drive the integration of technology in health education. This can lead to a broader acceptance and implementation of digital tools in healthcare.
  

• Promoting Preventive Care: Our focus on early detection and education promotes a shift towards preventive care, which can reduce healthcare costs and improve patient outcomes in the long run.

In summary, Rock from the Heart's innovative approach not only addresses the immediate needs of patients and caregivers but also sets a transformative precedent in the field of cardiovascular health education and support. Our model is adaptable, scalable, and capable of driving systemic change, making a significant and lasting impact on the landscape of cardiovascular care.

Rock from the Heart faces several barriers that the support from The Amgen Prize could help us overcome. These barriers include financial constraints, technical limitations, legal challenges, cultural hurdles, and market barriers. Here’s how The Amgen Prize can assist us in addressing these challenges:

Current Challenge: While we have successfully expanded to Fargo and maintained a hybrid event model, further scaling requires significant financial resources.

Amgen Prize Support: The financial grant from The Amgen Prize would enable us to fund additional events in new locations, ensuring sustainability and continued growth. This includes costs related to venue rental, event logistics, promotional activities, and staff.

Current Challenge: Developing high-quality, up-to-date educational materials and resources is resource-intensive.

Amgen Prize Support: Funding would allow us to hire medical experts and educational content creators to develop comprehensive and engaging resources, including new videos, interactive webinars, and printed materials.

Current Challenge: Managing and analyzing data from our events and support programs to measure impact and improve services is complex.

Amgen Prize Support: With additional resources, we could implement sophisticated data management systems and hire data analysts to better track participant engagement, health outcomes, and areas for improvement.

Current Challenge: Navigating healthcare regulations and ensuring compliance with legal standards is crucial for our operations, especially as we expand.
Amgen Prize Support: Access to legal expertise and financial support would help us hire legal consultants to ensure compliance with all relevant healthcare laws and regulations, safeguarding our operations and reputation.

Cultural Barriers
1. Cultural Sensitivity and Inclusivity

Current Challenge: Ensuring that our programs are culturally sensitive and inclusive, particularly in diverse communities, requires specialized knowledge and resources.
Amgen Prize Support: The support would enable us to conduct cultural competence training for our staff and develop tailored educational materials that respect and address the cultural contexts of the communities we serve.
2. Community Engagement

Current Challenge: Building trust and engaging effectively with communities that may be skeptical of healthcare initiatives requires time and resources.
Amgen Prize Support: Funding would facilitate community outreach programs and partnerships with local leaders and organizations, fostering trust and encouraging participation in our events and support groups.

Current Challenge: Differentiating ourselves in a crowded market of healthcare initiatives and securing partnerships can be challenging.
Amgen Prize Support: Recognition from The Amgen Prize would enhance our credibility and visibility, making it easier to form strategic partnerships with healthcare providers, non-profits, and corporate sponsors.

Current Challenge: Replicating our model in different markets while maintaining quality and impact requires careful planning and resources.

Amgen Prize Support: Financial and strategic support would help us develop a scalable model that can be adapted to various markets, ensuring consistent quality and effectiveness across all locations.
How The Amgen Prize Can Help
By addressing these barriers, The Amgen Prize would empower Rock from the Heart to:

Expand Our Reach: Grow our programs to new communities, both in-person and virtually, ensuring more individuals have access to critical education and support.

Enhance Program Quality: Invest in high-quality educational resources and advanced technology to improve participant experiences and outcomes.

Rock from the Heart is uniquely positioned to design and deliver our solution to the target population due to our deep connection and commitment to the communities we serve. Our team, led by individuals who have personal experiences with aortic disease or have close relationships with affected individuals, brings a genuine understanding of the challenges faced by our target population. Here's how we embody this proximity and ensure community input guides our efforts:

1. Team Representation
Diverse Backgrounds: Our team represents a diverse range of backgrounds, including healthcare professionals, caregivers, and individuals directly affected by cardiovascular conditions. This diversity ensures that our perspectives are comprehensive and inclusive.

Personal Connection: Many team members have personal experiences with heart valve disease, aortic aneurysm, or aortic dissection, either as survivors, caregivers, or family members. This firsthand understanding drives our passion and dedication to our mission.

2. Community Engagement
Listening and Learning: We actively engage with community members through focus groups, surveys, and one-on-one conversations to understand their needs, preferences, and priorities. This ongoing dialogue ensures that our programs are responsive to community input and reflect their agendas.

Co-creation of Programs: Community members play an integral role in the design and implementation of our initiatives. Their input guides the development of educational materials, support services, and event programming, ensuring that our solutions are meaningful and relevant to their experiences.

3. Cultural Sensitivity
Respect for Diversity: We recognize the importance of cultural sensitivity and inclusivity in our programs. Our team actively seeks feedback from culturally diverse communities to ensure that our materials and events are respectful and culturally appropriate.

4. Continuous Improvement

Feedback Loop: We maintain an open feedback loop with community members, soliciting feedback on our programs and initiatives and using this input to continually improve and refine our offerings.

Adaptability: Our team is flexible and adaptive, willing to pivot our strategies and approaches based on community feedback and changing needs. This agility ensures that we remain responsive to the evolving needs of our target population.

In summary, Rock from the Heart's team is deeply rooted in the communities we serve, with personal connections, diverse perspectives, and a commitment to meaningful engagement. By listening to and learning from community members, we ensure that our solutions are designed with their input, ideas, and agendas at the forefront, ultimately leading to more impactful and effective programs that meet the unique needs of those affected by cardiovascular conditions.

Impact Goals for the Next Year and Five Years
Next Year:

1. Increase Awareness and Education: Reach 10,000 individuals with comprehensive education on heart valve disease, aortic aneurysm, and aortic dissection through a combination of in-person events, virtual workshops, and online resources.

2. Expand Access to Support Services: Establish at least three new virtual support groups catering to diverse communities, providing emotional support and practical guidance to 500 patients and caregivers.

Next Five Years:

1. Empower 50,000 Individuals: Expand our reach to empower 50,000 individuals with education, support, and resources, reducing disparities in access to cardiovascular care and improving overall health outcomes.

2. Establish Sustainable Programs: Establish sustainable programs in five new regions, providing ongoing support to underserved communities and ensuring long-term impact and continuity.

Measurement and Achievement:
Short-term Indicators (Next Year):

1. Reach: Measure the number of individuals reached through in-person events, virtual workshops, and online resources, tracking against the target of 10,000.

2. Participation: Monitor participation rates in virtual support groups, ensuring that at least 500 patients and caregivers benefit from emotional support and practical guidance.

Long-term Indicators (Next Five Years):

1. Cumulative Reach: Track cumulative reach over five years, ensuring that we achieve our goal of empowering 50,000 individuals with education, support, and resources.

2. Expansion: Evaluate the establishment of sustainable programs in three new regions, assessing program longevity, community engagement, and impact on health outcomes.

Achieving Goals:

• Community Engagement: Maintain ongoing dialogue with community members to ensure that our programs are responsive to their needs and priorities.

• Partnerships: Strengthen partnerships with healthcare providers, non-profits, and government agencies to expand our reach and influence policy change.

• Data Collection and Analysis: Collect and analyze data on program reach, participation, and outcomes to inform decision-making and drive continuous improvement.

• Advocacy Efforts: Mobilize community members and stakeholders to advocate for policy reforms, leveraging our collective voice to drive systemic change.

By setting clear impact goals, measuring progress through specific indicators, and leveraging community engagement, partnerships, and advocacy efforts, Rock from the Heart is poised to achieve transformational impact on individuals affected by cardiovascular conditions over the next year and the next five years.

Theory of Change: How Rock from the Heart Makes a Difference

Rock from the Heart's theory of change is straightforward: by providing comprehensive education and support, we empower individuals affected by heart valve disease, aortic aneurysm, and aortic dissection to better understand their conditions, access quality care, and improve their overall health outcomes. Here's how our activities lead to immediate outputs and longer-term outcomes for our target population:

Activities:

1. Education and Awareness: We offer educational workshops, symposiums, and online resources to provide individuals with accurate information about their conditions, treatment options, and self-care strategies.

2. Support Services: We facilitate support groups, peer networks, and one-on-one counseling sessions to provide emotional support, practical guidance, and a sense of community for patients and caregivers.

Immediate Outputs:

1. Increased Knowledge: Participants gain a deeper understanding of their conditions, leading to improved health literacy and informed decision-making regarding their healthcare.

2. Enhanced Support System: Participants feel supported and connected through peer networks and support groups, reducing feelings of isolation and anxiety associated with their conditions.

Longer-Term Outcomes:

1. Improved Health Outcomes: Empowered with knowledge and support, individuals are better equipped to manage their conditions, adhere to treatment plans, and adopt healthy lifestyle behaviors, leading to improved health outcomes and quality of life.

2. Reduced Healthcare Disparities: By providing accessible education and support services, we contribute to reducing disparities in healthcare delivery, ensuring that all individuals, regardless of background or socioeconomic status, have access to quality cardiovascular care.

Evidence and Validation:

• Participant Feedback: Feedback from participants in our programs consistently highlights the positive impact on their understanding, emotional well-being, and ability to manage their conditions.

• Success Stories: Numerous success stories and testimonials from individuals who have benefited from our programs serve as evidence of the effectiveness of our approach.

In summary, Rock from the Heart's theory of change revolves around the belief that education and support are fundamental drivers of positive outcomes for individuals affected by cardiovascular conditions. Through our activities, we aim to empower individuals, reduce disparities, and improve overall cardiovascular health in the communities we serve.

Rock from the Heart is an all volunteer organization. 
8 working board members

10 volunteers dedicated to project and event management

Seven years

Our nonprofit organization is deeply committed to valuing and promoting diversity, even though we are based in a primarily white community. While we are still in the early stages of establishing specific diversity programs, our commitment is unwavering. We are actively working towards building partnerships with local minority groups and planning multicultural events to ensure our services and support are accessible to everyone. Our goal is to create educational resources and provide translation services in the future to address language and cultural barriers. Our board and staff are dedicated to ongoing diversity training and awareness, and we are continually seeking ways to make our organization more inclusive. By prioritizing these efforts, we aim to foster a more inclusive and vibrant community where everyone feels valued and empowered.