By: Brigid Martz Smith -
We live in a digital age where more information is available at our fingertips than ever before. We now have access to information in a matter of seconds that used to take weeks to locate through time intensive literature reviews at the library. Chapter 12 of Oncofertility Communication: Sharing Information and Building Relationships across Disciplines is devoted to the unique set of challenges presented through these new and varying methods of communication. In this chapter, Oncofertility Communication Tools for Professionals and the Public, authors Stefani Foster LaBrecque, Harlan Wallach, and Kate E. Waimey identify the many communication platforms utilized in Oncofertility. Because Oncofertility, by nature, requires reaching multiple disciplines and stakeholders, communication strategies must be geared towards everyone from high level scientists to patients and their families.
Communication tools range from primary and review articles in scientific journals to social media; each end of the spectrum presenting a differing set of hurdles. For example, academic publications have credibility with funding sources and in scholarly settings but often reach a small group of already engaged stakeholders. On the other hand, social media reaches a very large audience but credibility is often in question as the information distributed is not subjected to a rigorous review process. Thankfully, a number of communication tools have been developed to bridge the gap.
Professional websites can be a wonderful resource for clinicians and patients searching for information. The Oncofertility Consortium website has different sections specifically geared towards researchers, clinicians, and patients and are modified routinely to keep up with technology and the needs of our audience. Websites can be used to host archived information from previous presentations, publications, and procedures as well as broadcast new information. A unique aspect of the Oncofertility Consortium website is our interactive National Physicians Cooperative map which identifies collaborative practices with ‘pins’ on the map. Providers can view the map and see what hospital systems they can refer patients to and patients can access this same information to find the best fit for them. In conjunction with the Oncofertility Consortium website, patients and providers are encouraged to use the Fertility Preservation Patient Navigator website which is instrumental in connecting patients with fertility preservation providers.
Moving past websites, Chapter 12 discusses the new rol
e of virtual meetings in the communication toolbox. Current mechanisms for virtual meetings are Vidyo videoconferencing which allows for face-to-face audio, visual, and data-sharing and Adobe Connect, where a single presenter broadcasts video and data slides and viewers ask text-based questions that can be answered in real time. These newer technologies have really helped to bridge the gap between clinicians and the public as well as broadcast clinical scenarios for input from colleagues across the globe. While these technologies will never replace the benefit of in-person communication, it is a way to foster those relationships when distance and schedules conflict.
The next generation of technology involves the utilization of smartphones. People are constantly connected to their smartphones and we are identifying ways to reach patients through this ever-present device. The Oncofertility Consortium led the charge with their iSaveFertility app for the iPhone (no longer available) which provides clinicians the ability to view educational pocket guides about fertility preservation in men, women, and children and email applicable information directly to patients from the app. A web-version was launched in conjunction in the app to make consistent information available to non-iPhone users and those wanting to view information on their desktop. The next step is upgrading the app for use on newer iPhone platforms and having a counterpart available for android users. Again, technology keeps evolving and we need to keep up!
The best way for technology to educate patients and their families is through Public-Facing Web sites. These sites house short videos of patients, scientists, and health care providers, and include animations which are especially useful for children or individuals with poor literacy. One example of a public-facing website is MyOncofertility. MyOncofertility is a patient education website available through the Oncofertility Consortium which provides concise information to patients and their families regarding treatment options and available resources. The Oncofertility Consortium receives feedback from patients and can edit material based on what is desired by the public. From these comments, the Consortium is able to locate new avenues to reach the public. The most applicable one being social media. To complement the information provided on public-facing websites, the Oncofertility Consortium maintains a social media presence through Facebook, Twitter, YouTube, and the Oncofertility Consortium blog. With these tools, it is easy to keep a large community informed of upcoming events, existing tools available through the Consortium, and support our wide range of collaborators.
Moving forward the Oncofertility Consortium is dedicated to strengthening the survivor-patient-provider connection through both updated technology mechanisms and in person communication. This will be done through our established web presence (websites and social media) as well as discussions with our national and global partners to receive input on current experiments and procedures. Continue reading Oncofertility Communication: Sharing Information and Building Relationships across Disciplines and tour our Oncofertility Consortium resources for more information.