The Down Syndrome Diagnosis Network is a national organization that has two major components: online support and medical outreach. Our medical outreach centers on affecting the conversation about Down syndrome during the diagnosis process. Although many of our members have wonderful experiences with their doctors and medical professionals, many others do not.
At DSDN, we hope to raise awareness that there are nationally recognized guidelines in place on how to deliver a Down syndrome diagnosis. The guidelines state that medical professionals should provide the most current information about Down syndrome and discuss the diagnosis without bias.
One way we aim to raise awareness is through our Physician Feedback program. DSDN President, Heather Bradley and Medical Outreach Director, Jenny DiBenedetto, answer some of the most common questions we get about our Physician Feedback Program.
1) What inspired you to create the Physician Feedback program for DSDN?
Heather: After hearing the diagnosis stories of hundreds of families, it became clear to me that each family's diagnosis experience was not equal. Some families received the news in an unbiased way with information and access to support, while other families were told "I'm sorry" and not provided any up-to-date information on Down syndrome. DSDN's Physician Feedback Program was created to help change this.
2) How does the Physician Feedback program work?
Heather: The Physician Feedback Program is really quite simple. To participate you simply need to write a letter to your medical provider on how the diagnosis was delivered. We ask that families reflect on how the diagnosis was delivered versus the professional recommendations on how best to share the news. DSDN has a sample letter on our website that families can download and make their own. After they've mailed their physician their letter, they then can request that DSDN mail resources to the physician to ensure that future families have up-to-date information and access to support. http://www.dsdiagnosisnetwork.org/feedback
3) Why is the Physician Feedback Program important? How does it make a difference?
Jenny: Submitting a letter through the DSDN feedback program is important because it’s the only way that the medical provider will truly know how their interaction with a patient impacted them- positively or negatively. We are such a supportive Down syndrome community, that we have the opportunity here to try to make the next family’s experience better, by sharing what went well or could be improved based on our own experience. If you don’t know better, you can’t do better. Our program goes beyond just sharing feedback, It also informs the medical provider of the evidence-based guidelines for delivering a diagnosis that exist. The combination of real world examples and medically-endorsed guidelines is a powerful and productive roadmap for a provider who truly wants to do right by their patient.
Are you ready to make a tangible difference in how Down syndrome diagnoses are delivered? Participate in the Physician Feedback Program today: http://www.dsdiagnosisnetwork.org/feedback
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