One of the aspects of my work is patient advocacy. I know that the word advocacy is often a dirty word in the health system, but yes, I do use my skills to speak up (by literally speaking, or through my writing) on behalf of health injustices. I believe in politely and persistently lobbying for change in the health care world. My husband and I led the All Kids Deserve Health Services campaign last year – I stand by the work we do in this area.
My youngest son has a disability, and I am in this for the long haul. I believe one day he will do his own advocacy work. Even today, I redirect questions about him from health professionals to my son – so he can answer them himself. He’s very capable of answering how old he is, or what grade he is in, or how he is feeling today. As Ann Goldblatt told our Bird group last week, it is important to go directly to the people who have the lived experience.
My boy is only ten years old. So right now, I am his proxy for speaking up for change in the greater health system. I do this for a number of reasons: to benefit him directly, to help future generations, and to help myself heal from negative experiences in health. I believe it is our responsibility as patient and family representatives to speak up to make change in the world.
This is where Healthy Debate comes in. I’ve been intrigued by this website for some time. Their mission is to provide accurate, easily accessible information about health care to the public, practitioners, journalists, students, managers and policy makers. They’ve recently created a Citizens’ Advisory Council, and I’m pleased I was chosen to be a member. The ten advisors participated in a call on Monday, and I’m impressed by the diversity and passion of the group. I’m on the look out for meaningful engagement opportunities, and am impressed that Healthy Debate is looking to patients and families to help guide their content and website. As usual, I have lots of ideas for change – I’m glad to have a forum to share them.