I would have told you, on our first visit, that I don’t do well with soft science. But you appeared rushed, with an office full of patients, and I did not feel that I needed to explain my personality. You see, I am a logical and rational thinker, and my primary goal in life is to understand the world around me.  I need proof. And then I probably need even more proof, just to prove it.  Understanding other personalities and learning styles plays an important role in effective communication. I just assumed that since you are in the business of communicating with people that you knew this.  In order to get information across to another person you really need to understand how they will interpret what you are saying. You need to make adjustments in your language, allow time for questions, and be prepared to say that if you don’t know the answer, you will find somebody who does.

Please, above all else, understand this: you are talking about my child, in whom I will never lose faith. Whatever you tell me, I will be taking home, and reading, searching and asking questions about. This is not to prove you wrong,  but to better understand the mechanisms at work, and to provide myself a strong knowledge base from which I make decisions. If you want me to have specific information that you believe to be “true,” you need direct me to where I will find it. Otherwise you risk debating me at a later date.

I would have told you that in a world where approximately 65 percent of the population relies on visual information for learning, it is irresponsible to let me leave your office without a piece of paper reminding me of what you have told me. Providing me written instruction reinforces what you have said, and saves both of us the frustration of trying to get the same answers from you a second time.  It adds value to your service. I know you think that this will be a pain to organize, but standardize your treatment plans to common health issues (like ear infections and stomach flu) and move on from there. It will save you a ton of time in the long run, and helps me gain trust in your advice. I could go on forever about the inequities within a service driven industry that does not recognize that an empowered and well informed patient will also be your best patient, in turn making your job easier.

If you would have told me about the pivotal role social media in health care would play in our journey, I think I would have laughed at you. The idea is not new, as there have been support groups and bulletin board services available on the Internet since its beginning.

These are places to go for support, when people’s problems are not being addressed by their medical teams. What they search for is understanding, satisfactory answers to questions they have not already found. Sometimes, with a less common diagnosis, the internet is the only place one may find support for particular conditions.  Previously, these operations were typically run by volunteers with similar health issues, and not monitored or moderated by anyone in the medical profession.

Times are changing my friends. The new breed of social platforms like Twitter and Facebook provide users with an ability to find an even larger support base, bulletin boards and support networks are being built by not-for-profit patient empowerment groups and the internet is becoming sleeker, making it much easier to navigate. Some progressive medical establishments are providing their patients with health care “portals” allowing them 24/7 access to not only trusted information sources but appointment scheduling, test results and email access to medical staff to answer questions.

Without these socially based medical groups I truly would have been lost in the system, overwhelmed by terms I did not understand, frustrated by lack of information, and floundering when it came to moving forward with medical decisions. In a sense, standing in those different medical offices, I was suffering from a debilitating case of learned helplessness, feeling as though I had all power removed, naked, unknowing, hiding my high school diploma and accepting whatever scraps I could, just to get by.

Some of the best information I have been able to find in regards to 11q triplications has been provided to me by Chromosome Disorder Outreach, a web-based not for profit support group that was kind enough to send our medical information to a Geneticist, along with my questions. A response landed in my email account less than 24 hours later, along with two published scientific articles on 11q disorders.  Unique, another web-based chromosome support group also provided me with information on genetic disorders, including a number of publications that explained basic genetics in plain language. Over the course of our journey I have spoken with researchers, geneticists and professors in the United States, England, France, Japan and Italy. I am almost sad to say that this information was provided to me free of charge.

Our own geneticist was obviously paid for through our provincial health care coverage, and while I appreciate knowing the results of our testing, I have received little or no information from them. When physicians and medical professionals don’t provide patients with the information required, patients will find it themselves. And there will be no guarantee that the information we find will carry an ounce of truth. Our experience with health care social media has been absolutely, without a doubt, invaluable.

Imagine my surprise when I scanned Twitter for the first time and discovered that our trusted pediatric clinic was already there: ready, willing and able to delve into the uncharted territory of health care in social media.  And they do it well.  They are, in many ways, reinventing the face of Canadian health care, and are sure to become leaders. I am happy to say that my faith in them has never faltered, in fact, it has grown.

Where there was once the darkness of no information, and little help from our own specialists, there is now light. An offer arrived from Italy to have the entire family tested for the genetic anomaly at no charge. My faith in the Ontario health care system, that I once believed in, is dwindling, and I am suddenly willing to cross international boundaries in the fight for information concerning my child’s health and well being. This is an ethical dilemma for me. I do not want another family to have to struggle as much as we have to get this far, but I’m not sure what other choice we have.

I would have told you, almost six years ago, that our health care system and support networks were adequate, and that I believed that everyone that used them got the care that they required. But today I am much wiser, and I stand before you and say that it is time for change. There is a better way to this.  I have found my voice, and I now feel empowered. I may be small town, but I have big ideas for change.

Jennifer Sprung blogs at Cleverly Disguised as Cake.

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