Most who know me know, I advocate for all of us challenged with a chronic care condition involving chronic pain as well as their family, caregivers, healthcare professionals and public. One in five people worldwide are affected with a condition that causes pain, so it is bound to affect you or someone you know. But until you feel the pain it is difficult to understand all of the challenges it brings on. Whether physical or mental, pain can and will consume you if you allow it to and only the patient can begin the process of healing! My hope is that my speaking engagements and books will inspire your eventual transformation filled with HOPE and motivation.
As an educated and informed chronic patient, I have found the use of technology in healthcare a necessity. I remember back before there were pagers, computers, cell phones, smart devices. Back then I didn’t know that I was going to be a chronic patient. I didn’t know how much being able to access my medical records or speaking with a provider on my care team would mean to me. Now I know that I need providers who are also up on technology and the advances that are occurring on an exponential level up of health care.
As I have shared in past blog articles, my providers all are interactive with each other and my care is better and more accurate for it. I know that I am one of a few patients who receives this level of care from my team. I understand that there are rules and that I am protected with my health records through HIPAA. I also get that being able to text my medial provider opens me up to exposure of my medical conditions to hackers and others. I see the benefit in having the choice to access my records through portals even with the risks. I would also like the portals to be able to speak to each other in computer terms so that I have only one universal health record. I don’t believe that this will ever happen though. Therefore, communication between providers and being able to access all of the records in the system is more important than ever. I used to order copies of all of my records, I am working on my 9th 3-inch binder of records! The difference is now I just print the provider summary instead of the whole record for easy access.
Being your best advocate is a challenge, but once you are organized and up an going with advocacy, you can do so much to help yourself and others get better access to proper and timely care. One way to share your advocacy work is join the International Pain Foundation Partner program. Another way is to join the WEGO Health Patient Leader Network!
