This past fall, I was a panelist at the Agency for Health Research and Quality (AHRQ) Annual Meeting Plenary Session in Bethesda, MD. The conference theme was “Moving Ahead: Leveraging Knowledge and Action to Improve Health Care Quality,” and what everyone was there to discuss was the importance and urgency of engaging patients in healthcare research.
My message was simple: We need to improve our listening to patients and consumers, which means that we may need to retrain ourselves to recognize the exciting ideas that patients bring, especially when they are outside of our own paradigm of health and healthcare. While very well meaning, often organizations think they are providing opportunities for engagement, when in reality, they are, without patient and family input, saying, “here’s the problem and here’s how we can make it better for the patient.” And the motivation for this is great, and individuals might feel they really know what patients want. It’s not true engagement without involving the actual patients who can represent their point of view, values, and needs.
This does NOT mean that patients need to be technical experts –the value they bring is that they are experts on their own experience. Patient knowledge is often very experiential. And many don’t approach health care as a purely rational issue. And, many decisions don’t have a simple technical solution. Thus, these decisions are deeply personal and often emotional. Some patients may have a lot of scientific knowledge as well, but they will be viewing it through the lens of their own values, experiences, and risk tolerance.
To support patients navigating these decisions, we need to hear from patients what is important to them and what they care about and what they want to do. To be more concrete, patients want clinicians to elicit their values, beliefs, risk tolerance, and understand benefits and tradeoffs of treatment options. They don’t expect to or necessarily want to be arbiters of the quality of evidence. But in order for this engagement to occur, clinicians must take as their charge the explanation and elicitation of patient views, including the outcomes of care they want and seek, how the decisions that are being made at each stage will further or hinder these outcomes.
Engagement requires system changes that make engagement possible. If providers shut down patients and families efforts to participate in decisions, if hospital rooms are too small to allow family members to be present, if hospital boards, advisory groups, or safety committees do not include patients and their families, then we cannot expect engagement to take hold.”