Strengthen and Support Communities
Building a community is difficult work. It takes blood, sweat, tears and a lot of funding to establish and grow patient communities, advocacy groups or non-profits. A lot of people like what these communities can offer but they do little to support their function and work. At VitalCrowd, we want to support the work of the communities where patients already gather – not compete with them for funding or site views. Our goal is to build VitalCrowd as a tool for growing and strengthening the groups that are already there, expanding their reach to other disease communities, providing tools for them to be effective partners in research and identifying new sources of revenue to support their continued growth.
Expertise Valued Equally
Many people say they “value” patient and caregiver input, but too often it stops there. While physicians and consultants are compensated for their time, patients and caregivers are expected to be satisfied with the mere fact that they are included in the process. We think that’s not enough. It belittles the expertise that patients and caregivers provide, and demeans the insight gained through lived experience. At VitalCrowd, we recognize that we need that insight to make research work. It’s not just valuable, it’s the essential missing link. Everything about VitalCrowd is designed to honor the expertise of patients equally and reward them for the value they bring.
Each study protocol that is co-designed using the VitalCrowd platform will be required to designate a portion of the grant funding to compensate those who participated in the design. The amount and nature of the compensation will vary, based on the cost of each study and the contributions of individual VitalCrowd community members, but the principle is non-negotiable –if a study is funded, then our community will be compensated.
Those of us who live with disease aren’t just patients. If we’re lucky and healthy enough, we have day jobs or did at some point. We know a lot about a lot of things, and some of that knowledge could be helpful for improving health care research. Whether you’re an aeronautical engineer, a school teacher or full-time mom or dad, there’s a good chance that you know how to solve problems or design solutions that could make research better. It doesn’t matter if they’re based on a hunch, a Eureka moment or your Ph.D. thesis, we want to give you the chance to share all of your ideas for making research better.