November 17, 2009

Patient Share

I was just reading NPR's Patients turn to online community for help healing, and it's reminding me of my contribution to a group project for IRLS 608, Planning & Evaluation of Library & Information Centers. Unfortunately, I think someone in my group took our website down that we used to present our project (not sure why since we did a great job and got an A on it). Anyhow, I needed to come up with a new service for our fictional health sciences library (follows). I really think there is a lot of benefit in 2.0 for libraries and wanted to make that a main component of my new service, especially since our pretend library really wanted to further expand and promote digital resources.

VII. New Service Proposal

As explained in our marketing plan, recent surveys collected and analyzed by the library revealed that many users (patients, students, instructors, and physicians alike) desired to learn more about first-hand experiences of patients’ narratives on health related issues, such as experiences with illnesses, reactions and side effects to medications, therapy treatments, successes with Complementary and Alternative Medicine (CAM), and other health related topics. This realization has led to the planning of a new library service that will allow users to publish their thoughts in an interactive forum hosted and monitored by the library staff. Our new service is called Patient Share.

There is a lot of important information in anecdotal information that can be lost when empirical evidence is preferential from being considered more reliable. Not only can students and physicians learn more about what individuals are specifically experiencing, but other patients going through similar circumstances can relate to each other on a more personal level, rather than looking at just charts, graphs, and statistics. This new service will help improve research ability for all and will be easy to use and maintain by incorporating Library 2.0 software. Each patient will have an individual profile with a unique login, where personal information including demographics, lifestyle habits, and family history can be posted. Due to issues of privacy, profiles will be anonymous, and patients can enter simply a first name or a pseudonym. Through these profiles, patients more recently diagnosed with diseases can look up others similar to them taking courses of action they have similarly chosen or are interested in and see what has been successful and what side effects might be; likewise, individuals can contact each other and ask questions, connect, and create a community of support. Students and physicians can search through the database of profiles, tagged entries, and filled out forms for detailed, anecdotal evidence about conditions and treatment. Patients might be more likely to disclose information when in an anonymous, personalized, and comfortable setting, making this information increasingly useful.

Intended impacts will affect patients, practitioners, and the library. Through this new service, patients will be able to connect with others to form a virtual community, make informed decisions on treatment, and have a confidential avenue to express thoughts and emotions. Practitioners will be provided with an extensive resource of detailed experiences with various diseases and treatments to better understand the patient experience and what methods are working. Information from this database can be combined with Evidence Based Medicine (EBM) information to promote well-rounded research. Through this service, the library will increase communication between the community, the hospital, and the university, and the library’s place within, as noted in the goals of the Barbara Gordon Health Sciences Library. This service will draw more direct attention to the library from all of these groups, as the library is the focal point and home base of Patient Share.

Our marketing surveys revealed that not only did users want to learn more about first-hand experiences to enrich research and informed decision making, but also to connect with people going through experiences to be able to better monitor long-term progress. Patients also wanted more information about where to turn for community and for an easy-to-search resource, as most pointed out that when one first receives a diagnosis, a mind-set for heavy research in medical literature is not always possible. Finding human stories – first-hand narratives – would be comforting and simple to navigate. Because the library specializes in databases and we are interested in improving our virtual presence, which is another of our goals, we chose to create this virtual community of 2.0 anecdotal information to benefit patients, practitioners, and our university library.

Based on the communication process in the marketing plan, we will be incorporating a number of methods to inform the campus and community about Patient Share, both for participation and research purposes. First, we will have signage promoting the service with a URL to an information web page, so users can consider this method of research while using other materials. We will also have flyers explaining the service throughout our library and in appropriate areas of campus and the community. Our new position, Digital Initiatives Librarian, will also serve as a liaison to attend college and departmental meetings, as well as community group meetings relevant to this new service to garner support and interest in Patient Share and other offered services. The Barbara Gordon Health Sciences Library will also maintain a variety of listservs to inform and educate stakeholders about news and our services based on specific subjects; Patient Share will be advertised through listservs pertaining to this service for potentially interested parties. We will also have a listserv community members can join who are not affiliated with the university. Last, we will also be promoting ourselves through our website by listing highlights on the home page, such as “Database of the Month,” which Patient Share will be included in.