Innovation isn’t always about new technologies and medicines – it can be as simple as changing the language we are using to allow for a better connection with patients and their families.
Sarah Krüg, CEO at CANCER101 and Founder of Health Collaboratory, told the attendees at the AUA and ASCO Astellas Advocacy Breakfast meetings about the Words Do Matter project. Since 2016 the initiative has looked at over 4,000 health-related words and phrases to see which ones resonate with patients and which create a barrier to effective communication.
Among those that can confuse or mean little to their intended audience are “patient journey,” “patient centric,” “co-create” and even “caregiver.”
The power of words
“Many patients encounter a rollercoaster of emotions and the way in which the healthcare team communicates with the patient and care partner is important, and that starts with the language they use.
“When the doctor provides a patient with a diagnosis, they have to translate it into language that fits into the context of the patient’s life, so they can understand what that diagnosis means for them in the short and long term,” said Sarah, adding that between 40% and 80% of what is said during a medical encounter is lost immediately afterward.1
“The words we use have a major effect on our thoughts, perceptions, emotions and actions. We often underestimate the power of words. We focus on medicine and innovation, but not the basic principles of human connection,” said Sarah.
“There is research that shows a strong correlation between clinician communication skills and patient satisfaction with decisions and their ability to follow through with management and treatment recommendations.”
And it’s not just about the words we use. As Sarah pointed out, people learn in different ways and the way information is delivered is also important.
Overcoming barriers to effective communication
Asked about the barriers to effective communication, Sarah said there was sometimes fear and anxiety on the side of the patient that prevented them from speaking up and asking questions and a lack of time to personalize the communication on the side of the professional.
That’s not to say there are not solutions, however, and CANCER101 is working to develop tools that will help clinicians build better communication into clinical visits and empower patients and care partners to better communicate with their clinicians.
“More effective communication is not necessarily new to clinicians, but we need to find ways to better integrate this into practice to ignite a participatory relationship between patients and their healthcare team. It may start with the doctor but must be reinforced by the healthcare team. Nurses or other members of staff can reinforce key concepts to ensure the patient and/or care partner truly understand the information they are given so they can act upon it and make informed decisions, and it has to be tailored to the way the person takes in information,” Sarah said.
“We need tools to create better workflows – tools that solve the issues while managing workload so that they don’t create new problems in healthcare.”
CANCER101 has developed a tool to ascertain a patient’s learning style, and is leading the charge to design a new lexicon to replace the well-intended but fundamentally misunderstood terminology.
Sarah also highlighted the group’s Prescription to Learn website, which is a trusted ecosystem that aims to map the high-quality education resources available to cancer patients. The initiative allows patients and their care partners to personalize their educational journey and access credible information based on their preferences, but also allows clinicians to prescribe resources to patients and their care partners.
“Prescription to Learn identified where there is duplication, as well as where there are gaps, and that is where we can come together and address some of the unmet needs and co-design solutions. This is a phenomenal opportunity for advocacy organizations to collaborate on the solutions to ensure patients have access to the right information and tools at the right time”
For more from the Astellas’ Advocacy Breakfast, see our interview with Tyler Ludlow, Chief Decision Scientist at the Decision Skills Institute.
- Kessels RP. Patients’ memory for medical information. J R Soc Med 2003; 96:219-22.