Patient Affairs Committee Spring - 2014

Ongoing Committee Initiatives Social Media Project incorporates Social Media discussion into www.transplantliving.org Wait Time Transfer Project develops FAQ’s for Collective Transfers Teen Transition Project develops patient resources The Committee recognizes the increased use of social media such as Facebook in the solicitation of living donors for transplant. Social media has been a powerful resource for good for many in the transplant community. There is also the potential for great risk as patients and loved ones reach out to try and save lives. The Committee has worked with UNOS Communications to develop and include cautionary language regarding the use of Social Media into the Living Donation Page of www.transplantliving .org The primary intent of this project is to encourage the safe and responsible use of social media in every aspect of transplantation. The Committee is further committed to promoting discussion between patients and transplant professionals regarding the use of Social Media as part of the process, as another means of encouraging safety in social media for patients and transplant hospitals. The Committee has collaborated with Operations in the Wait Time Transfer Workgroup. The Committee has taken the lead in developing an FAQ document that targets patient as part of a proposed Online Toolkit for transplant programs that are involved in a collective, or mass transfer of patients. The document could also be used as an educational resource for the Patient Information Kit that is available upon request through the UNOS Patient Services Line and the UNOS Online Store The Committee is collaborating with Instructional Innovations and Communications to develop online resources that promote early emphasis on teen transition for patients, families and professionals.

New Committee Initiatives Kidney Referral Education Project Pancreas Allocation Brochure Kidney Allocation System (KAS) Education Project The Committee is collaborating with the Minority Affairs Committee to develop a patient focused resource to encourage early referral for transplant, with a focus on minority and underserved communities The Committee has provided input in the development of the new Pancreas Allocation Brochure The Committee is collaborating with the Kidney Committee, UNOS education and UNOS Communications to develop patient focused resources to educate patients and the general public on the new KAS

Questions? Laura Ellsworth laura.Ellsworth@ppvotesnorthwest.org Leave a space for regional representative name and contact info – RAs will update Freda Wilkins MSW, M.Div Freda.wilkins@unos.org