How can patients be more involved in their treatment decision making?

Jul 25, 2018
How can patients be more involved in their treatment decision making?

Education is a big part of shared decision making (SDM) – but it’s by no means sufficient by itself, according to decision scientist Tyler Ludlow.

Tyler, Founder and Chief Decision Scientist at the Decision Skills Institute, gave a presentation during Astellas’ recent breakfast meetings for advocates held at the AUA and ASCO conferences.

He said: “In SDM research, one of the general outcomes that has been proven over and over is that patients who are involved in their own healthcare have a greater understanding of their disease and the treatments that are available. They also tend to be more certain of, and satisfied with, their treatment decisions.

“While it would seem common sense that these would translate into better health outcomes for patients, that doesn’t bear out in the research just yet.”

Turning shared decision making into routine practice

The evidence for the benefits of SDM is mounting up, but despite an increase in the availability of high-quality information, there’s still a way to go before it is part of routine practice.

“Advocacy groups do a huge amount to educate patients and to encourage them to be active participants in their own healthcare. But even with all the information, people have to be clear about their preferences and need ways to see and understand trade-offs between options.

“The takeaway is that clear and concise information is wonderful and necessary but that isn’t enough for SDM to just happen. There’s still a lot of work to be done on top of that.”

Part of that work is letting patients know they are entitled to, and could benefit from, participating in their own healthcare, said Tyler, explaining that at its core SDM was simply a collection of good behaviors for having a conversation.

“People don’t need any special training to start emulating these as patients. Just learning the term and building an expectation of what it means can lead to change,” he said.

A new term for a new approach

During his talk, Tyler proposed the addition of the term “deciderate” to the lexicon of skills terminology.

Where literate relates to proficiency with letters and numerate with numbers, this new word describes someone who is able frame, structure and analyze their options in order to make “good decisions.”

To become “deciderate” patients need to be “upskilled” and be given tools to help them have conversations that embody SDM.

Tyler said: “Being involved is an action, an engagement, and there is a connection between skills and action. Research suggests that we get more involved in the things we are more skilled at, and we become more skilled at the things we are involved in.

“It’s a virtuous circle. Most people say, ‘let me learn a little, then I will try it out.’ If they get a positive feedback, they will continue. So, if we want patients to be more involved, one thing we can do is help them build up their skillset.”

Becoming “deciderate” includes the ability to recognize and work with the “three key building blocks” at the heart of every decision: the alternatives that are within our control, the uncertainties that are outside of our control, and our own values.

“Our values are the measuring sticks by which we can identify the alternative that we prefer the most. Without being explicitly clear what we care about, we can’t know which option is actually best for us.”

Understanding decisions are an opportunity not a burden

In the long term more widespread, systemic change will be needed if SDM benefits are truly to be reaped.

“Even if all patients everywhere were instantly upskilled overnight and everyone walked into their physician office tomorrow, expecting and wanting to engage in SDM, it doesn’t mean the system would be ready for it,” said Tyler.

“Like all systems, healthcare is made of many cogs that collectively seek a state equilibrium.  If only one cog changes, the rest of the system pulls it back into place.  True change only occurs when the when the system finds a new equilibrium together.”

A key aspect of the mission for advocacy groups is to help patients to get better care, said Tyler, meaning they have a role to play in changing the conversation.

“Most of us tend to view decisions as burdens. People often use the phrase ‘I have to make a decision.’ Our goal is to help people move from viewing decisions as burdens to seeing them as opportunities for growth and understanding,” he said.

For more from the Astellas’ Advocacy Breakfast, see our interview with Sarah Krug, founder of Health Collaboratory, CEO at CANCER101 and Founder of Health Collaboratory.

How can patients be more involved in their treatment decision making?


As a decision scientist, Tyler helps people (1) to see decisions as opportunities for growth rather than as burdens, and (2) to make better decisions.  After a decade of helping senior leaders and organizations make large, complex, and strategic decisions, he turned his focus to individual and personal contexts.  He founded the Decision Skills Institute to make cutting-edge decision science accessible to everyone.  Tyler created the Shared Decision Making Summit, an annual event that brings together stakeholders from across healthcare (patients, caregivers, advocates, providers, researchers, pharma companies, regulators, etc) to identify practical ways to collectively change healthcare and improve decision making.  At home, he with his wife try to apply decision science in one of the most difficult contexts – in parenting their nine children.



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