Yesterday marked the first official meeting of the patient wing of the new Pursuing Perfection Web Site Development Team. The team consists of 6 patients working with Dawn and I on developing a website that fills their needs. We will be involving clinicians and other P2 staff members on the team as the site develops, but will be creating the first prototype based strictly on these same, committed patients working with us on a weekly basis. I've collected a list of an additional 10 patients who are willing and anxious to review the site after it's been created, giving their perspective, feedback and insight to make the final product even more accomodating for a variety of patients and family members.
It's difficult to summarize the specific feedback that we received.... a lot of ideas were presented for both the type and presentation of the educational content and the functionality of the shared care plan. Dawn and I have a lot of work to do over the next week to have something to show them next week that is updated in response to all of the wonderful feedback. In general, I think the comment "they don't want to know about diabetes... they want to know about their diabetes" summarizes it well. We need to find new and innovative ways of asking people questions and providing information responsive to where people are at.
Other general types of information the patients seemed very interested in getting from the website were finding information, finding local resources, finding support, and who to call when. They also showed interest in connecting with other patients through discussion groups or listservs and connecting with professionals through secure messaging, ask-an-expert, and FAQs. Up an coming research was another desired topic.
Our next meeting will be Thursday, 11/21 where we intend to go over our upgrades based on the input and feedback we received, and going further and deeper with development plans.
