Forward for Life: Helping our Recipients Give Back UNOS Region 7 Educational Program February 13, 2015 Jaime Myers, RN, MSN, CCTC

The Forward Focus Excellence in Organ Donation Collaborative is an initiative aimed at moving a donation process that works in silos to a process that has a shared vision, collaboration and accountability across the donor hospital, OPO and transplant center. Background: Forward Focus

Eligible Deaths Other Potential Donors Not Declared Brain Dead What Is The True Denominator for Potential Organ Donation? Other Potential Donors (DCD, > age 70, etc.)

Cumulative data indicates a possible 66% increase in donors. UWHC OPO Actual Donor and Potential Donor Data Analysis

The Possibility Current State Breakthrough Improvement 200 more lives saved each year!! 88% Conversion Rate 129 Organ Donors 3.13 OTPD 403 Transplants 88% True Conversion Rate 175 Organ Donors 3.45 OTPD 603 Transplants

Select Topic May and June 2011 Planning Group Jul and Aug 2011 Identify Change Concepts Oct and Nov 2011 Enroll Participants Dec 2011 Prework LS 1 Mar 2012 LS 2 Nov 2012 LS3 Apr Faculty Members Committe d 9 Largest Donor Hospital CEOs Committed and Teams Enrolled Theda Clark Facilitator Commitmen t of 8 hrs/week Support System ListServe Site Visits Conference Calls Rapid Sharing Data Reporting Website Collaborative Engine & Timeline

Team Transplant: Identify a Problem Limited means to communicate to patients and live donors about how they could assist with the promotion of organ donation. Transplant staff had limited materials and information on where to point patients who did inquire.

Goals Increase number of volunteers throughout the UW Organ & Tissue Donation service area Increase in volume of thank you’s sent to donor families and donor hospitals Increase in state registry volumes Increase number of donors Improve patient satisfaction

Aim Statement To develop a formal program to heighten patient and family awareness of the need for organ donation and to better engage patients in donation awareness activities to increase organ donation.

Transplant surgery Inpatient Nurse Manager Transplant coordinators Transplant Recipient Administrative support Marketing OTD Hospital Liaison Live donor Organize a Team

Target Population wait list patients transplant recipients live donors Family members of all groups More than 10,000 people we can target to help with our mission! More than 10,000 people we can target to help with our mission!

Material Development Attended patient support group to elicit ideas: –Provide patients with folder/packet at time of discharge with information and materials on organ donation. Materials provided can include volunteer information if patients wish to get involved at this time. Also, ways they can share their story, and information on community activities. Provide trinkets (bracelets, bumper stickers, pins) that patients might be willing to wear. –It seemed patients would want to wait until they received the transplant, rather than being confronted about this while on the waiting list. –Should wait to have discussions with patients to solicit their further involvement until 1 st year anniversary.

Materials

Study: How are the materials doing? Methods: Survey Monkey ed out to patients who had a completed one year anniversary visit in our study period (August 2013-April 2014). 51 Surveys completed

Study Findings Forward for Life Survey Did you receive the Forward for Life folder? Answer OptionsResponse PercentResponse Count Yes 52.0%26 No 48.0%24 answered question50 skipped question1

Survey Findings Forward for Life Survey Have you had the opportunity to read and review the information in the folder? Answer OptionsResponse PercentResponse Count Yes 78.6%22 No 21.4%6 answered question28 skipped question23

Survey Findings Forward for Life Survey If you haven’t read the materials yet, will you in the future? Answer OptionsResponse PercentResponse Count Yes 100.0%6 No 0.0%0 If no, please tell us why: 0 answered question6 skipped question45

Forward for Life Survey You had your transplant approximately one year ago. Do you think this was a good time to be given the Forward for Life folder? Answer OptionsResponse PercentResponse Count Yes 88.2%15 No 11.8%2 answered question17 skipped question34 Study Findings

Forward for Life Survey It was not the best time because: Answer OptionsResponse PercentResponse Count It was too soon for me to be given this folder 33.3%1 I wish I would have received the folder at an earlier clinic visit. 66.7%2 Please tell us why you selected the above choice: 2 answered question3 skipped question48 Study Findings

Ways of Giving Back

Staff Survey

Folders moved to more convenient location Education to staff

Results

P. H. 45-year-old male Donor After Circulator Death Loved hunting, including trips to Wyoming with family and friends Green Bay Packer, UW Badger and Milwaukee Brewer Fan Liver and Right Kidney Recovered and Transplanted Letter from transplant recipient to team that cared for donor

Forward For Life project/folder/materials won an Award of Excellence and a Judges Choice Award at the Wisconsin Public Relations and Healthcare Marketing Society annual conference Fall 2013 Other Acknowledgement

Phase 2 Plan: Develop additional ways to help recipients thank donor hospitals Do: Record videos of patients Check: Feedback from donor hospitals