Living with chronic health conditions can become very isolating, and it’s important to have a wide support system. In addition to family and friends that you can lean on, patient advocacy groups can be very useful tools. Today, we’ll talk about the importance of finding places to share your experience, and where to go looking for them.
Why are patient advocacy groups important?
Patient advocacy organizations exist at all levels, from smaller local or online communities to wider national programs. These organizations exist to listen to patients about their needs, their condition’s specific implications, and to raise awareness for lesser known conditions. These groups can bridge the gap between your real-life experience and the medical professionals who make decisions about your care and the research into it. They are some of the best ways to get involved and get heard.
Some of patient advocacy looks like developing advice or policies that benefit patients, though there are also government groups that work on legislation and improving the standard of processes for patients.
What should I consider when looking into groups?
One of the biggest concerns in patient advocacy is something called the Allegiance Bias. This refers to the way that patient advocacy groups are compensated, and whether or not you feel comfortable trusting them given the source of their income and its potential biases.
In general, government advocacy groups only have an allegiance to the citizens of their nation, and can be trusted as a source of reliable information. These bodies include, for example, the The US Department of Health and Human services, and its Agency for healthcare research and quality.
There are also some non-profit patient advocacy groups you may have heard of, including the American Cancer Society and the American Heart Association. Though, it is important when looking into non-profit advocacy groups to keep in mind that some are supported and underwritten by for-profit groups, which may carry an inherent conflict of interest.
Where do I find them?
Patient Advocacy groups can be found by doing a simple online search into groups specializing in work with your condition, or by viewing the overview and compilation of some of the more expansive groups here.
In desperate situations, there are often hospital based patient advocates. While these people are typically part of the American Hospital Association, and often hold an allegiance to the hospital that employs them rather than the patient themselves -- they can still assist in matters such as explaining the cost breakdown of a hospital bill, or organizing transport to and from treatments.
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