What is “Public Comment” and why shou... - Power2Save Transp...

Power2Save Transplant Community

What is “Public Comment” and why should I participate?

IzabellaDOnofrio
IzabellaDOnofrioAdministrator

Do you ever wonder how you can influence change when it comes to the development of policies in the world of organ transplant? When the Organ Procurement and Transplantation Network (OPTN) begins to investigate how to solve any current policy issues regarding organ sharing and regulation, they provide opportunities for the transplant community to contribute feedback and make their voices heard.

The voices of the transplant community (transplant candidates, recipients, donor families, living donors, and caregivers) are an important part of this review. This policy development process is built to incorporate feedback and input from both the transplant professionals and stakeholders in the community. It is important to consider proposals from all angles- not only by people who are involved in providing donation and transplant care, but also individuals who are personally affected by transplant. This essential feedback is referred to as public comment.

The OPTN establishes a period of time, at least twice a year, where anyone can comment on a policy proposal when available, whether you support or oppose a proposal, to share your story if it relates to the proposed changes, or to present any concerns you have. All comments are reviewed carefully and can lead to post-public comment changes to a proposal. Your comments may ultimately affect any changes needed to improve the proposal before it advances through the policy development process!

OPTN welcomes feedback on these important proposals.

The Spring 2020 public comment period includes 11 proposals. This public comment period ends on March 24, 2020. To learn more about these current proposals and share your thoughts, please visit: optn.transplant.hrsa.gov/go...

7 Replies
oldestnewest

Hi Izabella. Public comment is so important. Thanks for sharing. Is there any way that I can share this for others to see if they are not on HealthUnlocked?

IzabellaDOnofrio
IzabellaDOnofrioAdministrator
in reply to MMcQueen

Hello, MMcQueen! Absolutely. Are you active on Facebook? You can share this information via Facebook by visiting our other community group here: facebook.com/groups/power2s...

This was a recent post! Please join us and you are always welcome to share anything we post!

Yes I am :) I also run Transplant Families a support for parents of pediatric transplant. We are always encouraging them to use their voice. You said it so well here, that it is definitely worth sharing. I will share it from Facebook. Thank you!!

Thanks so much for sharing this important opportunity we all have to 'weigh in' on transplant policy that affects each of us and so many others who follow in our steps of receiving an organ transplant. From my personal work serving on various UNOS/OPTN committees, I can assure you that every submitted comment is carefully considered and many changes to the proposal often result from someone's insightful comment.

BetterKidney4Me
BetterKidney4MeWelcoming Committee

Hi Izabella,

I found that the way for me to help get the word out about organ donations is having had the great fortune to be asked by my transplant doctor if I wanted to participate in a program that University Of Pennsylvania has in operation called, LEAPP. This stands for Longitudinal Experience to Appreciate Patient Perspectives where it enables me to be shadowed by two 1st year med students who were placed with me because of my long term history of chronic illness. It has been a great way to whisper into the ears of new med students about the importance of organ donation and how having received a kidney, has changed my life. Through this program I was also asked to participate with 2nd year med students who had just completed a month long program in the renal department. So again, telling them about kidney disease and transplant organs gets my story out and hopefully makes them more aware of the need for organ donations. In addition, many, many years ago, my nephew did his Eagle Scout project about organ donation to his high school classmates. He had an amazing person, who had had a heart transplant as the spokesperson. This heart recipient was just awe inspiring to listen to and hopefully he not only helped to bring awareness to high school students, but to the PTA and the faculty as well.

We all need to find the way in which we can comfortably spread the word one step at a time.

Ciao

Jean

Amen to that - yes, this is a one-on-one message to touch everyone in our community/family/network. Keep up that great work! Sounds like an awesome UPenn program.

BetterKidney4Me
BetterKidney4MeWelcoming Committee
in reply to GleasonJim

Thanks so! Appreciate the feedback. Now, to get involved on a national level...a goal to pursue! Ciao, J