By Barby Ingle, BSc Psyc, Guest Blogger. As a chronic pain patient, I see my primary medical provider at least once a month, but my specialists every 4-6 months. There are two providers I stay in touch with in-between appointments to give them updates on how I am doing and what is going on in my life health-wise. These two special doctors are my primary care provider and my kidney doctor.
As someone who creates kidney stones regularly after a complication of a medication, I need to keep an eye on my kidney function as well as take precautions once a kidney stone starts its journey from my kidney out of my body. So, I have to keep my doctor in the know as to how I am doing, if the pain gets unbearable, if I am spiking a fever or nauseous from the pain, and so on. There can be a lot of complications with kidney stones and therefore it takes in-between appointment updates.
I have always been very close with my primary care provider. This past year, my primary care provider decided that he wanted to change his practice and become a concierge doctor. The cost to the patients is an additional $125 a month whether you see him or not. In exchange, he went from seeing a few thousand patients down to 600 so that he could work on our cases more closely and also be there for us day and night. He had been providing concierge services to me since starting to see me back in May 2005, but with the growth in his practice he wanted to be able to take better care of all of his patients and decided to move into a more hands-on type of practice.
Having the 24/7 access to him through text messaging, phone (cell and office), email and patient portal I have been very lucky to get a level of care coordination as a chronic care patient that most don’t receive. I am able to share with him research studies and other educational materials that I gain access to. He does the same. He sends emails with blog articles, reminders, practice updates. I get phone calls letting me know about open houses that he is hosting, or if he is going to be out of the office and who will be monitoring us while he is off.
One of the most important times having such amazing access to him was helpful was when I was having a gastrointestinal bleed. I was able to call him, share what was going on and he called the hospital to let them know I was on my way in. They were ready for me when I arrived at the emergency room with my husband. This saved me money not having to take an ambulance and helped the ER staff and hospital staff take into consideration the other health challenges I live with including central pain syndrome, hypothyroid, seizures and gastroparesis.
Most of my providers work more than an hour each direction from my house, because I live in a rural area of the state, yet I want to know that I am getting the best patient-centered care I can. Having access to a patient portal and text messaging has improved my health, my engagement as a patient between appointments, and helps keep my providers up to date on what is happening with my health.
Neither of these two providers engage with me on social media but they do refer other patients to me who need help getting organized with their care. Sometimes hearing from another patient is just the support we need and also helps the providers focus on care coordination, care, and future outcomes. My oncologist doesn’t have the same connection to me as a provider but has connected to me on social media. She is able to share information picked up at Med Ed conferences, and also can check in on me through social media. At my last appointment, she ended up giving me her cell phone number so that I could reach her if I had an emergency situation where the ER staff was giving me a hard time and they could not get ahold of my primary care provider. I had shared socially that I was having trouble with getting an ER to access my Portacath, they thought that it was because I was afraid of needles and it was going to be a small blood draw. That small blood draw can cause major damage to me and set me back in my physical abilities. My oncologist didn’t understand until she saw first hand during and after care for a surgery she performed on me. I shared some of my story on social media and at the next appointment she was more than happy to be my advocate and step up and help me communicate to other providers who are treating me.
Patients need to be just as accountable for their health, life and care between appointments and having resources available is one great step to making sure that we are all better able to function on a day to day basis with backup available as needed for acute situations and follow ups. The way that we access care and medical needs has changed and is improving. It is always great as a patient to hear that a provider is upgrading their systems to become more secure in the patient-provider relationship. As an engaged patient, I know that what affects our health the most is what happens between appointments, for better or worse.
For ideas on connecting with your patients the way Barby's do with her, check out "4 Tips for Staying Connected with your Patients between Visits."