How Patient Communities Drive Change

A well-informed patient is a powerful thing. When patients are knowledgeable about their health and their conditions they’re able to take an active role in their care.

This can be anything from providing healthcare professionals with useful symptom diaries to effectively managing their symptoms at home. 

The only thing more powerful than a well-informed patient is a well-informed patient community.

Strength in numbers

When one patient is knowledgeable about their condition, they can better manage their symptoms and ensure they’re receiving appropriate care. When patients join together, the benefit extends to the entire community. 

Here at Eleven, patient data not only helps individuals but also helps the entire Sickle Cell community – even those who don’t use the platform. Every time an Eleven user records their pain score or spends a day wearing their ScanWatch, they’re helping our predictive analytics grow stronger and contributing to a database that can be used to power vital research.

Beyond the data, we knew it was important to create a space where people with SCD felt heard and supported – not just by our team but by their entire community. Having a rare disease can be an isolating experience, but it doesn’t have to be. Through our community, people have been able to seek advice and knowledge from people who have walked in their shoes.

For now, our work is focused on SCD, but we hope to expand into additional rare diseases in the not too distant future.

Driving change

Patient communities have great scope to be a force for positive change. For example, NICE guidance on exercise for those with Chronic Fatigue Syndrome (CFS) was recently changed thanks to consultations with the patient community. These consultations revealed that the reality of CFS was very different for every patient – while the old guidance’s recommendation of slowly increasing exercise was great for some patients, it was proving detrimental to others. 

Without discussion within the patient community, these differences in experiences would have never been realised. Including patients in decisions that affect their care seems obvious to us, but it is not yet common practice. Every patient community that collaborates to drive change within their own disease encourages another community to raise their voices – it’s a positive ripple effect and this is only the beginning.

Community creators

We may host a sickle cell community, but we certainly cannot take credit for creating it – communities and their successes are created by collective effort and the work of those within it. 

To that end, our aim is to empower everyone in the sickle cell community to have their voices heard. Heard by their peers, health practitioners, policymakers, and society at large. We seek to amplify the voices of everyone within our community and create a space where people feel comfortable adding their stories to the mix. 

If you’re a creator, we’d love to work with you and create something for the community together. Active on social media? Love networking? Join our Ambassador Programme! We’re always looking for more community creators to help us spread the message about Eleven Health. 

If you’d like to share your story, you can do so via this simple form or reach out to community@eleven.health

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