myPHA: A Legacy of Connection Blossoms Online

This week’s blog is written by Olivia May. Olivia has been working hard as part of the team developing myPHA. This new multi-purpose communications system for PHA has been designed to make it much easier to find what PHA offers that is of interest to you specifically and to better connect members with common interests. Put another way, you tell us about your interests, and myPHA will focus on getting you what you’re looking for. 

PHA has been built on communication and community. myPHA is the newest embodiment of those values. We all hope it will bring new information, connections and opportunity. I encourage you to join the hundreds of myPHA  members who have already signed up for this great new service during its inaugural month!

PHA's Founders at the Kitchen Table

As well-known as the story is, it’s difficult to write about PHA’s new online community without acknowledging our origins. The founding of PHA as a support group of four gathered around a kitchen table is a powerful image that remains at the center of our mission and efforts. Connecting patients and caregivers to each other was the first step in creating the organization that exists today – but that doesn’t mean it’s no longer a part of our work. Reaching out to those affected by PH is an ongoing project that is essential to making our resources available as well as maintaining a close understanding of our community. Making it possible for one patient to talk to another is no less important now than it was in 1991; however, we now have ways of doing it that have broadened our reach and united our community on an unforeseen scale.

Our new online patient community myPHA is the latest development in these efforts. Unlike the founding members, patients diagnosed today are often using the Internet as their primary means to finding information as well as finding others like them. According to a 2013 Pew Research Study “Health Online,” 1 out of 3 Americans have gone online to figure out a medical condition. Seventy-two percent of Internet users say they looked online for health information of one kind or another within the past year. With these numbers in mind, it’s easy to see how essential PHA’s online resources are to newly diagnosed patients as well as those who are already connected to us. And our online presence isn’t only a starting point to establish contact – for many, engagement with PHA happens exclusively online.

PHA created myPHA to offer a virtual home to our community. That meant we had to ensure a level of technical sophistication that would support the diversity and strength of our members. The PH community interacts in a variety of ways, for a variety of purposes. Some see the value in sharing their story as a singular message of hope, while others prefer to engage one-on-one. We chose the platform that hosts myPHA to honor the many styles of support that we already saw happening and to bring them together in one online “place.” myPHA is now home to

• a community-wide discussion board, 
• an interactive blog archive, 
• customized resource lists, 
• groups that are private to specific sub-communities, 
• and more! 

Best of all, it’s flexible to the changes that are sure to come as our community continues to grow and sprout new ideas and practices. Read the spring Pathlight article for FAQs and other details about myPHA

Throughout the process of designing and launching the site, we’ve received indispensable feedback from PHA PHriends, Board Members, support group leaders, and other involved patients and caregivers. We made it a priority to let the community perspective guide the major decisions of the site as we built it out, and that shows today. From the Groups and Blogs down to the design details, this is an online community that was shaped by and for PH patients and caregivers.

It has been a unique honor and pleasure to watch the site take flight. Since launching on April 10, 2015, myPHA has exemplified the PH community’s powerful ability to adapt and come together in new ways. Today, more than 600 members are registered on the site. We see the importance of this virtual resource every time a member joins and connects with others like them for the first time. Now, a patient diagnosed in a geographically isolated area can be immediately connected to an email mentor, information about their type of PH, a private group of patients like them, an informative discussion forum, a list of members living in their area and a collection of patient narratives. This is an enormously different experience from that of a patient diagnosed 10 years ago, and we will continue to work hard to improve that experience in any way we can. We hope that myPHA will continue to grow and provide a bustling home to the learning, support and connection that our community needs and provides. Connect with myPHA now