Speak up for your child’s health care

10/17/2016

Taking an active role in your and your child’s personal health takes many forms. It isn’t just about testing new medicines and treatments: there are other ways to influence how our province’s health care system grows and evolves.

The Northern Alberta Clinical Trials and Research Centre (NACTRC) has partnered with Alberta Health Services and the University of Alberta to run a general awareness campaign. This campaign emphasizes the importance of clinical research in Alberta and encourages the public to get involved.

Here’s what local mother Laura Saunders has to say about her experience participating in clinical research in Alberta.

I was invited to be a part of the Parent Advisory Council for a study that was looking at the practice of physicians providing a summary letter to pediatric patients after every visit. It was exposing the benefits of communication: did people walk away with fewer questions and better understanding the treatment that was going on?

When I was first offered the opportunity to join the letters study, I was excited and a little confused. I have no research or health care background and was completely unaware that patient-oriented research was a “thing.” I struggled to understand how I could add value to the study and how I was supposed to contribute as a non–health care professional.

Walking into the first meeting, I was beyond nervous. How would I contribute? Would my voice go unheard because I am not a health care professional? Would I be judged for my lack of knowledge? However, I felt equal to the doctor, to the PhD holders, to the very experienced research investigators. My personal experiences were met with genuine care and interest by the team members and my suggestions were implemented and built upon.

My voice as a parent is how I add value. As a parent of two very young children, one of whom has been diagnosed with asthma, I am a key stakeholder in the management of their health care, and my voice matters. My voice is the voice of my children who are not old enough to manage their own health care. Knowing that my voice is heard and can make a difference is very empowering.

Being a part of the letters study has opened my eyes to the importance of patient engagement as a critical component of health research and health care in general. It made me realize that, aside from the communication occurring in the doctor’s office at my visits, I have little information regarding my health. I have never seen my medical records and certainly do not remember everything that has been communicated to me over the years about my health.

Patient engagement has the ability to engage patients as key stakeholders in our health care system in an empowering and inclusive manner. I believe that the key to a sustainable and effective health care system does not exist without patient engagement. I do not want to be a bystander in my health care. Give patients a voice and a chance to contribute.

Visit bethecure.ca to learn how you can help us find better treatments and shape Alberta’s medical future.