I am fortunate enough to keep in contact with 1,000+ CF patients across the world in addition to CF patients at my center. We (CF patients/families) share our unique experiences about living with CF and our health care provider experiences with one another. We confide in one another and ask one another for advice; we also share our deepest fears with one another. One topic we all discuss in the CF community is our CF centers. While the CFF provides CF center stats about various issues from average lung function to average BMI for each clinic, it does not provide patient satisfaction stats. A CF center's reputation is not built solely on stats. Reputation is also built on patient satisfaction. We talk, so listen up.
We, CF patients, all want to believe we receiving care from the best CF center and CF specialist. We want to believe we are receiving state of the art care by leading CF researchers. We want to believe our doctors are going to save our lives. We need to have confidence in our providers. We compare our doctors to other CF patient's doctors and our personal experiences with CF center physicians. Our experiences with healthcare providers play a role in who we recommend to our friends and who we advise to avoid. Every doctor has his or her strengths and weaknesses. Some doctors have better bedside manner than others. Some doctors do not want to be bothered after hours or on weekends. Some doctors will respond to our e-mails, others won't. I have CF friends whose CF doctors have given out their personal cell phone number with instructions to call should an emergency arise. We share our CF center experience with each other in hopes of getting our friends to better CF care or even for transplant purposes. Hello, my personal CF clinic, you can thank me for encouraging some of my Cysters and FiBros to switch to our center. But you can take the credit for them staying.
Let's say a patient has a bad experience with a CF doctor, nurse, or team member. What are they likely to do? They're going to write about it on FaceBook, Twitter, and/or personal blogs (welcome to social networking), they're going to call their family and friends, they're going to Skype their CF friends and tell them about it, they're going to e-mail others, etc. In today's internet age not much is kept secret. In fact, I have known CFers who have recorded their conversation with their CF doctor via iPhone and later play it to others to prove their doctor has a rotten bedside manner. I know because I heard the conversation myself; it was mind blowing. Needless to say I would not recommend any CF patient to this particular physician.
When I'm hospitalized I live on FaceBook, Skype, FaceTime, and e-mail. During Skype calls with my Cysters and FiBros who are also admitted, we give laptop tours of our hospital rooms and compare: who has the bigger TV, who has the bigger hospital room, best bathroom, view from hospital window, etc. When I see CF patients who have beautiful views from their hospital rooms and I'm staring at a brick wall from my window I think, "I wonder what else is better at their CF center?" But what matters more than all those things is this: who has the better CF center, team of CF doctors, who is receiving top care, and especially who has better inpatient experiences. You could have the best CF team in the country, but if the inpatient side of care is miserable, patients are going to hate receiving care at your center.
Patients are talking. Your giving us something to talk about. While hospitals are working hard to keep our medical records private, many of us in the CF community are posting details about our health and health care providers on FaceBook. We're sharing our personal xrays, CT scan images, even pictures of procedures online. Why? Because we want to compare notes with others going through the same complications. We're learning from one another. We're realizing that every CF doctor has a different opinion about what test results mean. We're realizing medicine is practiced and is not an exact science, yet we realize when we're not receiving the best available care. We're getting smarter about CF, we're learning along with you, and we're comparing you to others in your field. We're talking about you and it's affecting the reputation of your CF center and you as a professional.
Your CF center's reputation rides on the back of the decisions you do or do not make for your patients. I believe this is great for the CF patient community, because it's breeding competition for new patients. We're jumping ship when it's sinking and finding solace in the CF center that's full steam ahead. If your losing CF patients to other centers, ask yourself why. With CF patients having an average life expectancy of just 37 years old, we don't have time to waste away at a CF center we're unhappy with. CF may not be as profitable as cancer in terms of insurance or research dollars, but it's still a competitive field. Just remember that next time you think your bedside manner doesn't matter, you just may end up being the topic of discussion on FaceBook, Twitter, Skype, or other social media outlets.
In closing, in the first paragraph of this blog I posted my personal chest xray (CXR) taken a few months ago at my CF center. I posted it on FaceBook, which then prompted my Cysters and FiBros to post their CXRs as well. Within a week of me posting my CXR at least 70 of my CF friends posted their CXRs, some including PFTs next to the CXR. It was interesting to see so many CXRs from CF patients in all walks of life!
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