Almost 6 months ago now Connie, Nancy and myself met to brainstorm how we might be able to have patients evaluate the value of the CCS / Patient relationship. We came to a conclusion that a paper survey with two distinct sets of questions would work best. The survey would start with the usual format of question and categorical response options. (ie, I feel cared for by my Clinical Care Specialists? Stongly Disagree, Disagree, Agree, Strongly Agree, Not Applicable.) The second part of the survey would have questions that would allow for open ended responses. It is the content of the answers to this second questions that I would like to share. (We do not yet have enough surveys completed, we have 30 and need 50, to perform a Rasch analysis of the first group of questions.)
(The answers to these questions have been copied verbatim except (My CCS) has been used as substituted for the names of the Clinical Care Specialist)
Open ended question #1: What would you like to add or change to this program?
Response #1: Very happy with relationship - couldn't be any better
Response #2: More interaction between the various physicians and providers as a cross check for patient care. I fell very strongly that the role of CCS should be expanded because the CCS provides a very vital contact for care providers and patients, note many patients are in isolated situations and cannot interact with others. The very fact that some would call is most important.
Open ended question #2: What other comments, concerns, and/or ideas do you have?
Response #1: Anything that can be done to get patients to participate in their care is positive and can be very helpful for their care providers, keeping a journal that is guided by a MD or other care provider could be used to provide very important information that would aid in caring for a patient it would also empower a patient with a felling of at least partial control of the outcome of treatment.
Open ended question #3: Share a story with us…Often times a great change begins one person at a time. We strongly feel sharing stories of success and failure will help us and others learn. If you have a story about your interactions with your Clinical Care Specialist or others in the health Care Community that you feel you would like to share please tell it out below or fill out the contact information and a staff member will contact you.
Response #1: I am beginning to feel that I can live with diabetes. My family has had this disease for many years. All have died of complications. I have information that my cousins are guessing at.
Response #2: When I need to get a test or see a specialist and can't get an appointment, (My CCS) gets me what I need very fast. When (My CCS) comes with me (My CCS) always asks the questions to help me and helps directing areas to assist me to get feeling better.
Response#3: (My CCS) has helped me in too many ways to comment. (My CCS) has improved both the safety of my care and my ability to care for myself. (My CCS) has been an educational resource for both me and for my family. I don't even want to think about coping with heart failure and diabetes without (My CCS). She is the best!
