Concerning Our Voices
Last updated: April 2023
My comments are my own. I want to thank this community for continuing to support people who have lived and lived experience.
That support reaches across a long list of conditions and diseases and has remained in their commitment, a sturdy and unflinching advocate for the patient's voice.
The challenge of maintaining the patient voice
I see too often now how what often begins as a grassroots community initiative is ultimately controlled by people with self-interest and career aspirations as the motivation for their involvement. Not all, of course, and often there is genuine allyship and desire and passion for improving outcomes for people facing challenges in their health or that of a family member, partner, spouse, or any person they care about.
The patient voice should remain the driving voice always and only occurs when there is a stated commitment towards that end. There has been a big shift in how healthcare is provided, along with a huge growth in community-based groups that provide support and knowledge translation, and advocacy, personal or in policy change and reforms.
The power imbalance I am referring to may have been predictable, but does that mean it is the best model for patient groups? I would argue that it has always been a challenge.
People often get even more ill over time and can no longer participate in the way they once could, but if the response to those changes is to ignore the need to better engage with people who are able to add their lived voice and not simply replace with someone without lived experience that has the current most popular credentials.
The importance of advocating for patient rights
Kudos to organizations like Health Union, who have stayed true to providing a safe and sensitive place for people who have lived with health struggles to share with others and provide information that only those of us who have lived with a disease can understand fully, even though we know we are all unique in our personal experience.
I am one of those people; luckily, I was cured 14 years ago. My health was not good before, and although some things improved greatly, I have lingering issues that can flare occasionally.
I remain committed to better understanding why and how we can improve long-term outcomes if facing ongoing problems.
This is one example. There are many reasons why we need a place where our issues are the most important ones.
Does this make sense to you? If it does, as someone who has an interest in getting involved as an advocate or can be the person who stands up for patient rights and our right to be leaders.
Please get involved. Your voice matters. It truly does.
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