Direct Benefits to Participants
Participants will have a personal, confidential dashboard that is built based upon the information they enter into surveys.
They can access their surveys at any time from their dashboard
- They will see their responses in graph form (pain/quality of life/etc.) that follow over time. If there is a change they will see it and be able to identify personal trends and patterns.
- There will be a resource section that will feed information on topics of interest specific to them.
- Local events can also be streamed in based on the participants geographic location regardless of their affiliation with any chapter.
Through their dashboard the participant will be able to benchmark comparisons within the available de-identified data; they can follow trends, compare changes over time, and make informed decisions about health. The comparisons can be in their own data, against any metric in the surveys they have completed, against any other de-identified grouping (disorder, gender, age, etc.) within the platform or in the general population (outside the platform).
Participants can share any information of their choosing with someone outside the platform (school, daycare, latchkey, primary care, dentist,healthcare provider, etc.) for a period of time of their choosing (one viewing, one week, one month, the school year, indefinitely). They can stop the share whenever they choose.
As they update information within their dashboard or within their surveys and it is pertinent to their CareLinks, the information in the CareLinks will automatically be updated (ex: providers, medication information, allergies, etc.). The participant has complete control of the CareLink – who it is shared with, what information goes into it, and when and for how long it is shared.
Participants will be able to access NHF publications relevant to their interests through the dashboard.
Benefits for Researchers
Participants will enrich the bleeding disorders community by sharing their experiences over a period of time. This will allow researchers to:
- Improve current treatments
- Discover transformational therapies
- Gain a better understanding of quality-of-life issues
- Identify research questions important to the bleeding disorders community
- Drive evidence-based advocacy initiatives
- Provide education relevant to people’s experiences and needs
The information collected by MyBDC will enhance and supplement existing bleeding disorders registries, including ATHN’s Community Counts surveillance project.