Participation and trust in health care

Five years ago, I didn’t give much thought to the way my local hospital managed the quality of care they provided. Then our son was born with multiple medical issues. Witnessing the complex medical care he received made me reflect more on the importance of diversity and inclusion among those making decisions about our health care.

I have always been disappointed at the low numbers of minorities I see in these settings. Because minorities are more likely to be economically disadvantaged and therefore less proactive about their health care needs (for many reasons), hospitals and health care providers need to understand our needs; however, we are less likely to participate in the processes that allow for that understanding. Having served on Patient and Family Advisory Councils at two different hospitals, I have witnessed how essential it is for us to make our voices heard in the health care setting. In reading the book Medical Apartheid by Harriet Washington, I began to understand more fully the historical roots of the mistrust and lack of participation I have witnessed in the health care system. Despite this history, however, our health and our lives depend on our willingness to use our voices to improve health care in America.

The United States has the most expensive health care system in the world. Because of its size and complexity, our health care system can be intimidating and confusing. This confusion prevents many of us from getting the most from our health care. Every hospital and healthcare system, and every individual working in the system, is expected to involve patients and families not just in care, but also in the governance of the hospital. After all, how can they meet our needs when we are not there to explain them?

Barriers to participation

Some cultural groups are less likely to be vocal in the health care system, and several social influences contribute to their silence.

  • Ideas about respect and fears about repercussions after being perceived as difficult or challenging
  • Belief in the absolute authority of the information that comes from physicians and other health care providers as the only contributors to knowledge about health
  • Low motivation to learn independently about health care issues, which is often a result of poor reading comprehension or critical thinking skills
  • Failure to understand the patient and family as active participants in health care and wellness
  • Lack of trust in the health care system, based on actual or anecdotal knowledge of past wrongs against people of certain ethnic backgrounds
  • Other social and family factors

The importance of advocates

We spend much more time with our families than with our physicians. Our family members and loved ones often have a close-up view of our health challenges and their effects on our lives. Family members can serve as good advocates or just serve as an additional set of ears listening to a doctor’s instructions or advice for care.

Never sign anything you don’t understand and that you haven’t read completely. Know what you are agreeing to and paying for. The language in the documents you receive about your care should be clear and easy to understand. If it isn’t, ask for a clearer explanation.  If you don’t understand something, do not sign it. Ask for a more detailed explanation so you can understand exactly what to expect. It’s their job to make sure you understand, and if they complain or seem impatient, don’t hesitate to find another provider who is patient and helps you to understand.

If you need to, you can contact a patient advocate at your hospital. Simply call the location’s main number and ask for a patient advocate. Most health care facilities and health care systems have this option to ensure that patients’ needs are being met.

Trust and participation

I don’t know about you, but I like a bargain. We pay a lot in this country for health care, and we get the most for that money when we participate in health care and contribute to making it better for others. Gone are the days when a doctor was the only decision-maker in the process of getting well. We are expected, as patients and family members, to use our voices to make sure we are getting what we expect and deserve for our health care dollars. Serving on a council or committee at a hospital allows me to participate in decisions about safety and care in a way that ripples out into the community.

We can participate by volunteering at a hospital, serving on committees or on patient and family advisory councils, or simply by talking about our experiences, negative and positive, with people who are participating and making decisions about health care for the community. The health care system then begins to learn and understand our needs, on both an individual and collective basis, and we get the most out of a system that is seeking to earn our trust and participation.

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Charisse Montgomery is the author of the Super Safe Kids series of books and safety tools. These tools engage children, parents, and their families in improving safety and advocacy in the hospital, the community and the home. A former educator, Charisse Montgomery has earned bachelor's and master's degrees in English, along with a master's degree in Educational Psychology, with research focused on informing and empowering parents of medically fragile children. She completed a graduate certificate in Patient Advocacy and serves on the Board at Rainbow Babies & Children's Hospital.

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