If you think the healthcare system is broken, you’re not alone. In Rebel Health, Susannah Fox not only agrees, but takes you on a birds-eye view into the grassroots movements growing that’s challenging the status quo in healthcare today in the US. As someone who’s had to navigate the complexities of hypermobility syndromes and the often-frustrating medical world, I found this book to be a breath of fresh air. It’s rebellious, it’s inspiring, and it’s exactly what the doctor didn’t order—but should have.
Rebel Health offers numerous actionable insights for anyone seeking to transform their health management journey including the too common challenges with Ehlers-Danlos syndromes of any type. I have wanted to build an app suited for EDS challenges to track symptoms, share data with doctors and help identify patterns and triggers, but without a lot of resources the task is elusive for most. Fox shares a few highlights from her book where she’s driven home these tactical ideas into key messages. She’s presented them in an operationalized way to approach the medical and business community to foster change:
- Patient Empowerment
Patients must be empowered to take control of their health and future successful parties must find ways to develop tools and platforms that enable patients to actively participate in their healthcare decisions and management. - Community-Driven Solutions
Grassroots, community-driven initiatives can effectively address healthcare gaps when we can come together to build collaborative networks and systems that leverage community knowledge and resources to support common health initiatives. - Technology Integration
Technology is a critical enabler of patient-led health solutions where investing in digital health tools, apps, and wearable devices that provide real-time health data and support. - Collective Action
Collective patient action can drive significant changes in healthcare policy and practice that the creation of platforms for crowdfunding, crowdsourcing, and community advocacy that amplify patient voices.
The Four Types of Changemakers in the Patient-Led Revolution
Rebel Health identifies four distinct archetypes in the patient-led healthcare revolution, each playing a vital role in the movement. See if you can identify which role(s) you play:
1. The Seekers
Seekers are individuals actively looking for new information, treatments, and solutions for their health challenges. They drive the demand for better resources and keep the community informed about the latest developments.
– Example: Patients who constantly research new medical studies, participate in clinical trials, and share their findings with the community.
2. The Networkers
Networkers build and sustain connections between patients, healthcare providers, and stakeholders. They facilitate the exchange of information, support, and resources, fostering a sense of community and collective strength.
– Example: Individuals or organizations that create and maintain online support groups, forums, or patient networks.
3. The Solvers
Solvers develop innovative tools, technologies, and methods to improve patient care. They introduce solutions that address unmet patient needs, often leveraging technology and design thinking.
– Example: Entrepreneurs creating health apps, telemedicine platforms, or new medical devices tailored to patient needs.
4. The Champions
Champions advocate for systemic change within the healthcare system, pushing for policy reforms and better practices. They engage in advocacy, awareness campaigns, and direct action to highlight healthcare injustices and demand better practices and policies.
– Example: Patients leading social media campaigns or organizing marches to raise awareness about specific health conditions.
Fox provides practical tips for these changemakers, such as picking a proxy to help navigate relevant online communities, learning how to pitch new ideas to investors and partners, and advocating for new treatments to the FDA.
Practical Strategies for Patients in the EDS Community
Drawing on the insights from Rebel Health, here are some practical strategies that patients in the EDS community can implement to take an more active role in their own healthcare, even while dealing with chronic illness such as EDS and its common comorbidities:
1. Join Online Support Groups
– Action: Connect with others who have EDS through online forums optimized by Chronic Pain Partners and other organizations and social media groups. Sharing experiences, getting validation and peer advice can provide emotional support and valuable information.
– Benefit: Building a support network can help reduce feelings of isolation and provide practical tips for managing daily challenges – and give you the connection to others who understand what you’re going through when other relationships might be struggling.
2. Contribute to Patient Databases
– Action: Participate in crowdsourced symptom tracking initiatives by logging your symptoms and treatment outcomes. Join patient registries researching solutions and potential testing and treatments like the Norris Lab.
– Benefit: Your data can help researchers identify trends and improve understanding of EDS, potentially leading to better diagnostic tools, treatments and understanding to spread awareness.
3. Engage in Telehealth Services
– Action: Use telehealth platforms to access medical consultations from the comfort of your home.
– Benefit: This can make it easier to see hard-to-find specialists who understand EDS without the physical strain or cost of traveling.
4. Advocate for Research Funding
– Action: Get involved in crowdfunding campaigns or other advocacy efforts to raise money for EDS research. Support your favorite nonprofits dedicated to changing the landscape in ways that are meaningful to you and those you care for.
– Benefit: Increased funding can lead to more research and better treatment options for EDS patients.
5. Educate Yourself and Others
– Action: Stay informed about the latest research and treatments for EDS and share this information with your healthcare providers and fellow patients. The Chronic Pain Partners newsletter is a great way to stay informed for free. Subscribe now if you haven’t already at www.chronicpainpartners.com or www.edsawareness.com.
– Benefit: Knowledge is power, and staying informed can help you make better decisions about your health. The more we know, the more we can fight for ourselves with enhanced self-advocacy tools and information.
6. Use Health Management Tools
– Action: Utilize apps and wearable technology to monitor your health and manage your symptoms. Apple’s tools in their watch, or emerging apps like Guava that support symptom tracking are becoming more available.
– Benefit: Maintaining real-time data can help you track your condition and communicate more effectively with your healthcare team, identifying patterns, triggers and the scale of the illness’s impact on your daily life.
Example Patient-Led Community Collaborative Tool for EDS Patients Available
Inspired by the principles of Rebel Health and patient-led innovation, we’re sharing the newest tech tool in the community to help you research credible answers to complex medical challenges related to EDS with the EDS411 Living Library, now available at [app.eds411.com](http://app.eds411.com). This free tool is designed to empower patients with Ehlers-Danlos Syndrome and related conditions by providing comprehensive, user-friendly resources for managing their health vetted by experts. The web-bades app (not on app stores) demonstrates the innovation for solutions driven by the power of community collaboration to crowdsource answers to questions healthcare is not, yet.
Key Features of the EDS411 Living Library
Community-Driven Resources
The Living Library is an expansive and growing collaboration of resources built by the community for the community. Anyone can add a resource that gets validated by an advisory board of EDS patients and providers. Patients, caregivers, and soon healthcare providers can contribute valuable information, ensuring the library remains current and relevant.
Saved Private Listings as Favorites
Users can create and save private listings within their profiles. This feature allows individuals to curate a personalized collection of the most relevant resources, making it easier to access critical information when needed and keep a list of most valued articles, websites, etc.
Upvoting Feature
The Living Library includes an upvoting system, enabling users to highlight the most useful and trustworthy resources. This community-driven feature ensures that the best information rises to the top, helping users quickly find the most recommended content.
So if you haven’t read it yet, know that Rebel Health isn’t just a book; it’s a battle cry for a better, more inclusive, and truly patient-centered healthcare system. Join the rebellion—because your health is worth fighting for. Or if you’re too tired, sick or fatigued to join just yet, checkout the innovative ideas Fox shares from other patient-led groups on her website https://susannahfox.com/patient-led-innovation/. In Fox’s words, “a connection to a just-in-time someone-like-you can make all the difference.”
Submitted and written by Christie Cox, author of Holding It All Together When You’re Hypermobile – a best-selling book on healing and dealing with the medical system, the physical challenges, but also a patient perspective on the emotional toll chronic illness can bring with invisible illness such as hEDS/HSD and hypermobility. There is hope for hypermobility. Go to www.holdingitalltogether.com for more information.
If you missed the Q&A webinar with Susannah Fox we held live to discuss her book, including the slides. You can view it here.
