The Transplant Recipients International Organization (TRIO) post-cancer transplant website

Mar 9, 2017
The Transplant Recipients International Organization (TRIO) post-cancer transplant website

Background

TRIO is a nonprofit international support organization for the entire transplant community aimed at improving the quality of lives of those affected by transplantation through support, advocacy, education and awareness.

TRIO serves its members by:

  • Providing support to transplant candidates, recipients, donors and their families.
  • Highlighting the concerns and needs of those affected by transplant to federal, state and local government bodies.
  • Communicating the views and issues experienced by those affected by transplant to the general public.
  • Providing current information on developments in organ and tissue donation, transplantation, medications, social issues, finances and any federal, state and local government initiatives.
  • Promoting organ and tissue donation as an important social responsibility.
  • Developing and supporting mechanisms to improve the availability of organs and tissues on an equitable basis.

Objectives

Our current five-year post-transplant cancer (PTC) project was borne from the combined personal passions of myself and a colleague to combat the number of deaths from PTC. The first deliverable of this project is a patient education website.

TRIO 5-year project

TRIO’s 5-year PTC project

Methodology

We decided that the site would be built around our four ‘L’ ethos:

  • Learning: To build a website that educates patients, families and support staff about PTC.
  • Look: To encourage people to be aware of early symptoms and look for any possible warning signs.
  • Live: To provide information on living with PTC, from prevention, diagnosis and treatment through to long-term recovery.
  • Links: To provide useful links for people to find relevant information themselves.

As part of achieving this objective, we decided the site’s main source of material would be video interviews with professionals and personal testimonials by people affected by PTC, encouraging patients to develop their own action plans based on shared best practices.

Results

Feedback suggested the original site was too complex for patients, so we turned to professional developers to create the easy-to-navigate, flowing site that exists today.

We are now working to better publicise our website to gather financial support to complete Phase 1 of this five-year effort – a unique concept that has been praised by both patients and medical professionals alike.

Once finished, success will primarily be measured by looking at site traffic as this will indicate how far our message is spreading. We also plan on using the PTC site as a platform for other organizations in the field to use as an educational resource themselves.

The already partially developed but fully framed TRIO PTC website can be seen at: http://TRIOwebPTC.org.

TRIO PTC website

The TRIO PTC website

Hints and tips

A major lesson for us concerns the time and effort estimations for a project of this calibre, which it turns out were incredibly optimistic. However, thanks to help from developers, healthcare professionals and patients willing to contribute to the site, we already have a substantial resource to help us achieve our goal. In that respect, it is important to recognize that support is always available for a project that touches a great number of people. You will be amazed at how many people will be willing to help if given the chance to do so.

The Transplant Recipients International Organization (TRIO) post-cancer transplant website

Author

As a long time transplant survivor, Jim Gleason has turned his career skills in support of fellow transplant adventure travelers since his 1994 heart transplant at the hospital of the University of Pennsylvania in Philadelphia, PA, USA. Beyond providing organizational leadership as president of TRIO, treasurer for a local Second Chance Heart Transplant Support Group, Jim has been active at the national level with government panel testimonies, including many years of UNOS committee work. Currently he is serving his second 3-year term on their Board of Directors.

Locally, Jim has been an active volunteer for  the local OPO (organ procurement organization) Gift of Life Donor Program both as a medal-winning athlete with Team Philadelphia for nine US Transplant Games and presenting at over 500 speaking events promoting organ donation from coast to coast.  He has met his donor family, sending updated life thank you notes annually for the lifesaving heart gift.

In 2006, Jim has shared his donor heart through marriage with Pam, a ‘donor mom’ who donated her 13-year old son’s (Christopher’s) organs when he was killed in a 1997 bicycle accident.  Together they tell the integrated stories of donation and transplant, sharing 7 grandchildren in a very active business and family life. Jim shares a detailed account of this heart transplanted life adventure in his online book, “A Gift from the Heart”.