What Does Being an E-Health Advocate
Mean to Me?
by Julie Ryan
E-health is a big topic right now, whether we realize it or not. New laws are requiring that doctors put records online, which should mean that we, as patients, have easier access to our own health information, but it may not. The move to e-health is a slow one and has only just begun. As a patient, being an e-health advocate is important to me, but it’s about a lot more than just my medical records. Being an e-health advocate means that I am attempting to use the internet to make a difference not only in my own health, but for others as well. Specifically, being an e-health advocate means:
- Making an effort to learn as much as possible – The Internet has made it almost too easy to find out so much information about anything we desire, including health conditions. Unfortunately, the internet may have made it too easy to get the wrong information. Being an e-health advocate means that I do my best to sift through all the information that is available to me and discover which information is correct and learn from it. When I see a new treatment shared, I research it and find out if any studies have been completed to back up the claims. I look for the positives and the negatives, but most importantly I look for proof.
- Interacting with other patients – My favorite part of being an e-health advocate is interacting with other patients and learning with them and from them. The patient community that is available online is amazing and is often the best source of support that we can find. Of course, not all patient groups are created equal and it’s important that we take the time to find good supportive groups of patients that we can interact with, groups that encourage us to be our best selves despite our illnesses, groups that encourage us to learn about our illness and understand what information is valuable and what is junk.
advocate is interacting with other patients and learning with them and from them.
- Sharing what I learn with others – Being an e-health advocate means that I’m not just advocating for myself and my health; it means that I’m advocating for you, for everyone who reads my blog and my articles. It’s important that I don’t just learn as much as possible for myself, but that I am doing so to help others. This is why I do my best to share everything that I learn. When I read a medical study, I take the time to summarize what I’ve read so that others can understand it and I share that on my blog. When I come across an interesting treatment option, I share it and I discuss it with others to find out what their experience has been with that treatment. We all have to work together on this as a team.
- Staying focused on the positive – As I interact with different groups of patients across my blog, other blogs, and social networks, I find that it is important to keep the conversations positive. We need to make the effort to communicate about how we can improve our lives, because it is so easy to get bogged down in negativity. If we are looking up at the possibilities, it’s a lot harder to get lost in the hole and focused on the things we may have lost. We must instead focus on the things we still have and the things we can still gain. Our illnesses may have stopped us from doing many things, but we still have much to give and we must continue to live.
- Working with doctors to improve communication – In addition to interacting and working with other patients to improve our lives through technology, it is important that we work directly with our doctors. As an e-health advocate I feel it is important for me to bring the conversations that I have with patients to the doctors, to let them know where we as patients feel things can improve. It’s often easy to just complain about what doctors are or are not doing, but until we let them know what we need, we can’t expect them to change. By letting them know that we need better access to information, better access to them through email or text, better treatments, they can see where they can improve. We can also bring information that we find to them. Our doctors see many patients and rarely are they only seeing patients with our specific diagnoses. They can’t be expected to know everything, which is why it is important that we bring the research to them. A good doctor will not have their ego hurt if you present them with valid information; a good doctor will be happy that you are communicating.
I believe that this last point is probably the one that we all need to work on the most, both patients and doctors. For too long we have been told that they are the experts and we should respect their knowledge, but no one can know everything. We have to work together with other patients and with our doctors; when we do that we have a chance at uncovering all the puzzle pieces that can potentially make our health whole again.
About the Author:
Julie Ryan has been diagnosed with fibromyalgia, endometriosis, hypothyroidism, TMJ, migraines, and cluster headaches. She shares her journey through her blog Counting My Spoons in an attempt to educate and inspire others who are dealing with similar health issues.