PROGRESS, PLANS AND COMMENTARY FOR DISCUSSIONS
New look page design
All of our communities received a visual redesign, which was professionally done. Because we have a relatively large number of members with visual impairments and with brain damage, we did this redesign in consultation with an occupational therapist. Reception has been excellent.
Improvements in SEO
As time goes on, our communities have not grown as much as we would have liked. We have redoubled our efforts at getting the Ben’s Friends name “out there”, in the hopes of improving our visibility on Google. To this end, we continue to add strategic, timely and topical content to both our Blog and to our Facebook pages, as well as dynamic content on our planned landing pages.
Landing pages
Our current project is the installation of landing pages on each of our communities. These pages introduce the community, and direct prospective members to relevant information. The reception that we have received on the first community landing page (Livingwitheagle.org) has been very positive. We hope to have many more communities with a similar (customized) landing page in the next couple of months.
Interns
We have fluctuating numbers of interns, varying from 3 to 15 over the course of a year. We have seen an increasing number of interns from countries outside the US: The Philippines, Vietnam, Canada, and the UK. This past year has been particularly challenging, because many of our interns were attending colleges and universities entirely online. The pressures and the prospect of having yet more work to do online became too much for many of them, and we experienced considerable attrition from this group.
Recruiting, involving, and uniting moderators
We have engaged one of our moderators, a retired IT professional, to unite our moderators (who have, up until now, worked in isolation) as a group. This is proving to be a major challenge, because of the limited IT skills which many of our moderators have.
Training of Moderators and Interns
Our Interns are being trained using Google Classroom, and we are working hard to encourage Moderators to make use of their Classroom as well. The latter is proving to be an uphill battle.
Patient Advocacy
We are moving ahead with our plans for Patient Advocacy training opportunities for our members. As time goes on, we see more and more clearly that our 80,000 members, patients of 40+ rare diseases, have many common needs in terms of how to become an effective patient who gets the best medical treatment that they can receive. We visualize a central facility (site/community) where any Ben’s Friends member can learn and discuss issues such as self-advocacy, how to communicate with medical professionals, and how to manage their medical data. We hope to include opportunities to address issues unique to some geographic populations such as health insurance and government services. This project is in its infancy, and we are starting to flesh out the conceptual framework that we have.
Ben’s Friends’ Patient Registry
A companion project to our Patient Advocacy Initiative, our registry will help match patients to research, trials and expertise, and help researchers and expertise to find patients. The key difference in our registry is that Ben’s Friends members will maintain control of their data at all times, which is not universal in other medical and rare disease registries.
Community Expansion and Support Enhancement Support
We have applied to the Chan-Zuckerberg foundation for a grant to enable our implementation of the Patient Advocacy and Registry projects.
Future plans and directions
- Establishment of Ben’s Friends Moderators as a cohesive community of their own
- Continued recruitment and involvement of patient advocacy interns
- Increased use of volunteers from within our communities
- Improved SEO
- Improved visibility of our communities in the Rare Disease world
- Introduction of Patient Advocacy training and awareness for all our members
Conference, Boston October 2021
We will be attending the Orphan Drugs and Rare Diseases conference in Boston, where both of us will be featured as speakers.
We look forward to the exciting prospects that the next year brings.
Tom and Clasina
TJ Lambdin and CE Field
