Here are some key facts about this website according to a template recommended by the National Cancer Institute and M.D. Anderson Cancer Center Patient Education Office. How to Evaluate Websites
1) ProtonPals, Ltd. is patient network. The entity is a Texas charity formed on March 5, 2009 and granted an IRS non profit 501 (c)(3) exemption on the same date. It is an all volunteer organization which operates the ProtonPals website, the electronic newsletter and the organization. The organization in turn, is run by a governing board of five directors all whom are patients who were treated at the M.D. Anderson Proton Therapy Center.
2) Funding for the organization and the site is provided by contributions from patients and mini- grants from two public foundations. A start-up loan in 2009 by one of the directors has since been repaid and retired.
3) The purpose of the site is to inform newly diagnosed prostate cancer patients of the specifics of this mode of treatment as well as survivors. Support in the form of person to person contact from a volunteer at the Center, but mainly through telephone and email exchanges.
4) The information comes from patients who have been treat and who contributed their stories and anecdotes. It also comes from the numerous resources at M.D. Anderson Cancer Center gleaned by attending patient presentations and conferences by the oncologists, physicists and support staff. Additional detail is obtained from research done by the leaders, from the doctors on staff at the center and those who publish on the internet. Research(literary) is conducted with significant help of the M.D. Anderson Libraries and librarians. For example the Pickens Research Library has been made available to us.
5) The information is as current as can be given that it’s done on a best effort basis by our small staff of volunteers.
6) The site chooses the links to outside sources based on the leaders reviews and ones that proved helpful and accurate to the patients. Links are provided to the US Proton Therapy Centers in operation and other patient support organizations.
7) The ProtonPals website collects limited information when you join and subscribe to the newsletter. This information is not shared but used by the founders who are on the ProtonPals board. The information collected and anecdotes are only attributed to you if you approve otherwise reported anonymously as you prefer and approve. These notes are typically obtained by asking ” how you’re doing?” after being treated at the Anderson Proton Therapy Center.
8) Interactions with the visitors to the ProtonPals web site are moderated by the founders of the organization. The leaders will respond to email and phone calls and will follow up on comments and complaints about the information. Significant work with specific software is done to reduce the threat of spam, hacking for names and addresses and inappropriate comments. Requests for medical help is handled by providing support but ultimately by referring the patient to the nurses and doctors at the centers.
J.E. Landry, President and Executive Director
Up Dated September 2012
NOTE: On funding, the grants sought for and received are from two public foundations, 1) the ExxonMobil Volunteer Involvement Program(VIP) and from Temple Foundation based in Lufkin, Texas. M.D. Anderson has provided support in singling us out as the patient support organization, linking to the web site and providing professional brochures and copy services for the organization.