BFS Survey: Report Back to the Community
As many of you know firsthand, what really makes the Boston Foundation for Sight unique is our unwavering commitment to patient-centered care that goes far beyond providing prosthetic devices. When you become a BFS patient you become the newest member of an extended family filled with deeply committed and compassionate professionals who work tirelessly to get to know you as an individual and understand your eye difficulties in the larger context of your life.
With this in mind, in November of 2009 we began working with organizational development consultant Beth Beard. She created an online survey and conducted additional research to help us understand the needs of our community more clearly, all geared towards enabling us to create outreach, education and support systems that better serve you.
When BFS asked for help with the survey, our community responded overwhelmingly; over 1,000 people from around the world offered their thoughts and feedback, sharing their unique- and very personal- stories with us. This week we released a comprehensive report back to the community based on what you have told us; you can download the full report here: BFS Survey: Report Back to the Community 2010. Below is some of what we heard from you.
Our community consists mainly of people with a variety of rare diseases and underlying conditions, often with long, uncertain, and difficult treatment courses. Notably, you are united by the shared symptoms of corneal disease - vision impairment, dry eye, pain and light-sensitivity - rather than by a single underlying diagnosis. You told us about the dozens of different treatments you have tried, few of them with significant success; and the multiple barriers to obtaining appropriate treatments, follow-up care and support that sometimes obstruct the steps in your journey to wellbeing.
However, in many ways because of the challenges you and your families face, you have also developed a number of adaptive coping strategies and skills. Thousands of you have gravitated to online support networks- in effect creating the systems you need to help yourselves and support one another in ways the medical community has not or cannot.
When we asked for your feedback about ways in which BFS can better support you, your responses fell mostly into two categories. You would like to see:
1. More community engagement through better communication and more comprehensive patient/family support networks; and
2. Increased capacity to serve more patients through additional clinic sites and increased visibility, education and outreach.
In the few months since we received the results of the survey, we have:
• Launched a new website! Please visit us at www.bostonsight.org to check it out.
• Launched our E-Bulletin (Visit our website and sign up today if you would like to continue to receive this!)
• Organized the first annual Stevens-Johnson Syndrome (SJS) Kids Week, taking place July 26th – 31st.
• Launched and expanded the PROSE clinic network, with partners currently seeing patients in California, Texas, India and Japan. Two more partner clinics will be opening this fall in New York and Michigan and more are in the planning stages.
Also keep an eye out for these new resources later this summer and early fall:
• Launch of our new blog on the website
• New communication and educational materials available for download or in print
• Launch of our Patient Ambassador Program which will connect our patients with other members of the community to learn more about what we do and offer peer support
• An updated and redesigned Facebook page
• Additional patient and community networking events
We are very grateful that our community took the time to give us this, and so much more valuable feedback. We hope when you read this report that you will take comfort in realizing that you are not alone, that there is hope and that we at BFS are listening and working on ways to be even more responsive to your needs and wants.