Nothing About Me, Without Me:
How Biopharma Can Play a Role in Shared Decision Making
By Olivier Chateau
CEO and co-founder, Health Union
Imagine buying a house without seeing it in person, and without knowing the price or monthly payments. Imagine taking a job without knowing the people, your responsibilities or your salary. Going blind into these momentous decisions without any additional information would be terrifying.
Now imagine that you’ve been diagnosed with cancer. You need to make decisions about treatment, but you don’t know or understand all of your options. You have no idea how a treatment will affect you or your family. You have no idea how effective it will be or what your future will look like. Not only are you making scary decisions but there’s often a sense of urgency to move quickly and make these decisions right away. This is the reality many people face along the cancer patient journey.
After a conversation with their healthcare provider, patients only retain 40% to 80% of the information that was shared, and when the gravity of a cancer diagnosis and the subsequent emotions come into play, it can be exceedingly difficult for a patient to retain information. Communication breakdowns can be very common, but shared decision making can be a powerful process in a cancer patient’s journey. When it’s done right, biopharmaceutical companies can play an important role in improving the effective practice of shared decision making.
More information is better.
First, biopharma must recognize the desire for and benefits of complete patient understanding. To help do this, it’s important to provide education and support materials geared towards ensuring that there’s a common language and an approach to tackling tough topics. Second, developing ways to bridge knowledge gaps, and set aside assumptions and biases can help create open and honest dialogue so patients feel more understood and have less regret. This may include tools and resources that help patients understand what they need to know about their options and help them understand what role they are entitled to play. Conversely, it also means helping health care professionals understand how to not let biases or assumptions get in the way, and reminding health care professionals the needs of patients are personal and individual.
Shared decision making needs vary and change over time.
There is no “every patient.” It’s important to understand the unique needs of individuals and how they make decisions. It’s also important to work to uncover the underlying mindset, beliefs, and motivations of patients. You have to ask to know, which underscores the importance of digging down deep to access and understand. There’s also a need to acknowledge the role of care partners, close family and friends, who represent an important dimension and another layer of influence—an audience who needs to be acknowledged and addressed in these decisions. Lastly, it’s important to learn from all types of patients. Be careful not to limit your research to just advocates and thought leaders: they may not represent the types of patients who are often overwhelmed and under-informed.
Healthcare professionals and patients need the same information.
Facilitate a level playing field—patients need to know they can have a role in treatment decisions and the healthcare team should openly acknowledge it. One way we’ve seen to help level the playing field is through direct-to-consumer advertising, which makes patients aware of treatment options that they can then discuss with their healthcare professional. Another way to facilitate a level playing field is via communities like those Health Union cultivates, to provide patients with relevant information from our community and from each other. In addition, leverage decision aids, as these are effective tools to help with facilitating open dialogue about individual circumstances.
Taken together, all of these point to the importance of education and support that help achieve alignment between healthcare teams and patients. To learn more about the shared decision making model and to glean more insight from Health Union’s oncology communities, download Health Union’s free whitepaper, “Shared Decision Making Through the Lens of the Cancer Patient.”