Table 3.
Top features and feature types—which features will make the unique value proposition a reality?
| Rank | Feature type | Top ranked features (top 50% within each type) |
| 1 | Connect patients, caregivers and clinicians through data | 1. Donate clinical data to facilitate the generation of new and qualified knowledge about the disease 2. Check information that can facilitate the access to a second opinion using clinical data |
| 2 | Providing education and support | 1. Content reviewed by an editorial board/ volunteering community management team will receive a “trusted source” stamp. All other content will still appear in the platform but with a quality warning (eg, “This information has not been verified yet”) 2. Filter the search per disease type 3. Access medical chapters—books with relevant information about diseases 4. Search engine across all content types (medical information, forums, questions, etc) 5. Upload information and materials on diseases 6. Search for a symptom 7. Filter by language 8. Filter per disease stage (certain diseases only) |
| 3 | Find a mentor who can support the experience with the disease | 1. Find a local disease ambassador, patient advocate or mentor 2. Ask for specific information that can worry them and that can be provided or curated by the mentor 3. Mentors have a dashboard to easily manage mentorship tasks |
| 4 | Community support | 1. Forum feature 2. Private forums, only accessible by invitation 3. User can follow tags and forum threads, appearing on the user’s dashboard 4. Allow users to contact through private messaging inside the platform |
| 5 | Resources for disease management & support | 1. Navigate a world map & find health care facilities (diagnostic centers, treatment centers, etc) 2. Navigate a world map to find various experts. Expertise filters would help navigate the map 3. Find other users by using profile filters (caregiver, patient, doctors...), interest or geographic filters |
| 6 | Interaction with a health care professional | 1. Health care professionals will be able to share their expertise with other clinicians that can have patients from the two pilot groups of conditions 2. Health care professionals will be able to sign up in the platform and volunteer to support the rare disease community |