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’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.
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.
