In Our Hands

How much or how little control do we have over own healthcare? Is it really in our own hands?

Let us start with hep C studies

Do hepatitis C studies include the impact of nonscientific variables, such as our views and understanding? Personal experience, which we call lived or living experience, is just as valid as scientific data, as it is first-hand and of the real world, not an abstract or data point, or a graph that compiles any number of pieces of information.

Whether we have any control over data and how it is collected and disseminated by researchers are valid questions for anyone taking part in a study or any group that is the focus of a study. If you are asked to participate in a study, please consider these important issues before agreeing. Evaluate whether you support the purpose and whether you value how the outcomes benefit yourself and others.

How about our healthcare and treatment?

In terms of healthcare access and direction of care and treatment, it is important to be an active part of the process. How much and how little we engage is up to us and should never be the sole domain of the care professionals we depend on for their knowledge and expertise. Whenever possible, choose a team-like approach for the greatest long-term success with success defined as progress in the journey towards our best quality of life, free of infection or any other health issue.

Are these things we have control over?

Whether we have control depends on one’s definition, as mentioned, and our individual situations regarding access to care. Too many of us do not have unfettered care access that is not linked to our finances. Even in places where there is some form of universal care, primarily provided by governments, healthcare access is not seamless. There are many factors, and the term “social determinants of health” speaks to a list of barriers for people on the margins of society.

Equitable access is the ideal model for healthcare access. Basing care access on income or social status is the norm in too many places. We need to work toward a system that is inclusive for all who have a need, not basing it on ability to pay. Too often, in my own observations, people in the hep C community come up against a system that is not welcoming or providing the care they need, or at least not in a way that respects their needs.

Be your own advocate

For many of us, how much control we have depends on factors that might seem beyond our reach. That doesn’t mean we cannot advocate for more control that can potentially improve our access to healthcare now and in the future. If that seems difficult or impossible, seek out someone who can help, like a peer support worker, patient navigator or an advocate.

Let us work together for healthcare that is truly in our hands.