From Bill McCue, Editor
In 2008, Jonah Grant-Scarfe, a PRP sufferer from Canada, recognized the value of Facebook as a tool with which to share PRP-related insights and experiences with fellow PRP patients. The PRP Facebook Support Group didn’t immediately catch on. In fact, it took five years just to reach the 100-member milestone.
The following update covers the period January 1 to May 31, 2020 and makes appropriate comparisons to 2019.
TOTAL MEMBERS
On January 1, 2020, the PRP Facebook Support Group began the new year with 1,814 members. The membership represented a combination of PRP patients, caregivers, supportive family and friends, and a handful of curious dermatologists.
There has always been a natural ebb and flow of members. Membership falls into three categories:
✽ Patients and caregivers who join for the “long haul” — often beyond any declaration of remission.
✽ Concerned family, friends who join to “learn enough about pityriasis rubra pilaris” to be supportive of the PRP patient and/or caregiver.
✽ Dermatologists with a PRP patient who join for a limited time “just to learn about PRP from the patient perspective”.
By year’s end the PRP Facebook Support Group ‘s membership was 1,814 This reflected a 12-month net gain of 378 new members (7 per week).
During the first five months of 2020 (21 weeks), a total of 199 new members have been approved with a total of 1,946 PRP Facebookers. This represents and average gain of nine new members per week compared with a seven-member-per-week pace in 2019.
The takeaway here is the The PRP Facebook Community continues to grow.
It should also be noted that 1,731 (89%) of the 1,946 members represents individual PRP patient profiles maintained in the PRP Global Database. The PRP Global Database now contains 2,020 PRP patient profiles of both PRP Facebookers and non-members with a valid email address.
MEMBERSHIP REQUESTS
The PRP Facebook Support Group is a CLOSED GROUP to (a) ensure privacy and (b) encourage members to participate with posts, comments and reactions.
A total of 214 requests to join the PRP Facebook Support Group were processed during the period January 1 to May 31, 2020. A total of 199 were approved and welcomed to the Land of Chat. The nine new members per week thus far in 2020 is on a par with the 11 new members per week pace in 2019, Fifteen requests for membership, however, were denied when applicants appeared to be joining “for reasons other that learning about PRP”, e.g., selling products and services.
POSTS
“The Land of Chat” is a well-deserved moniker based on posts, comments and reactions. Posts are a catalyst for sharing the insights and experiences of PRP patients and their caregivers. During the first five months of 2020, PRP Facebookers were responsible for 678 posts or an average of 136 posts per month. The monthly average of posts in 2019 was 156.
There is always a question in need of an answer.
COMMENTS
While posts may be the spark, comments are the wind that fuels the flames of communication. During the first five months of 2020, PRP Facebookers generated 10,932 comments or an average 2,186 comments per month. The monthly comment average in 2019, in contrast, was 2,387n.
It took the old, email-based PRP Support Group from November 1997 to November 2013 (16 years) to amass 29,000 posts and comments. In 2019 — only one year — the PRP Facebook Support Group generated 30,506 posts and comments. It’s all about technology. We are on a pace in 2020 to amass 30,000 comments as well.
REACTIONS
Reactions reflect a member’s acknowledgement of a post, e.g., Like, Love, Haha, Wow, Sad, and Angry.. Each month an average of 3,413 reactions are shared. This is on a par with the 3,449 “reactions” on 2019. 3,559 “reactions” are shared.
All in all, 28,675 posts, comments and reactions tells a new member that they are not alone.
ACTIVE MEMBERS
In my humble opinion there are three types of members:
✽ Engaged and visible: posts, comments and/or reactions. Half the membership can be categorized as engaged. During the first five months of 2020, a total of 1,639 PRP Facebookers (89%) have been active. This compares to 906 active members (50%) during 2019.
✽ Engaged from afar. These members read posts, comments, and/or reactions but NEVER post, comment or react. Hopefully they will benefit from the “sharings” they read.
✽ Lost Souls. There are members on the rolls who might never return to the Land of Chat. These members have put the PRP Facebook Support Group in their rear view mirror, have no intention to return, and have NOT deleted themselves from the Land of Chat.
Over the next seven months the growth of the PRP Facebook Support Group should continue at its current pace. The 2,021-member goal by January 1, 2021 is within the realm of the possible.