Most of us want our healthcare system to perform in a responsive, open and transparent way, and we expect our practitioners to listen to us and to engage us in the decision-making process. These are, after all the types of decisions that can impact our lives in profound ways, often requiring some degree of behaviour change on our part to carry out. Shared decision-making (SDM) has therefore emerged as important concept within the healthcare experience; it describes a joint process where healthcare professionals work together with patients to reach a decision about their care. It’s an approach where evidence and patient values factor into medical decision-making, which is especially relevant in scenarios where there is a close trade off between risks and benefits.
There are many framework models for achieving shared decision-making, and to really work, they all depend on trust and open communication between the patient and provider. SDM isn’t about convincing the patient to accept a physician’s recommendation, nor is it about acquiescing to every test or treatment request the patient makes. Rather, the process engages the provider and patient to relate and influence each other as they collaborate in making a decision about care. And while this trusting relationship and open conversation between provider and patient are important, they simply aren’t enough.
The reality is that many people arrive to healthcare conversations woefully underprepared. Risk perception, lack of basic, foundational knowledge about their bodies or illness, difficulty articulating and prioritizing personal values, and unfamiliarity with how to navigate the healthcare system will all significantly impede a patient’s ability to engage in a collaborative process. In the following article, I therefore explore other ways in which we might drive shared decision-making and patient experience. Hopefully, these ideas, examples and reflections might help you and your teams continue to build innovative solutions in healthcare too!
Patient goal #1: Help me understand and interpret risk
As I reflect on public discourse in the last few months, risk perception strikes me as a significant barrier for many patients. COVID-19 vaccines are becoming available to populations worldwide, and much media attention has focused on their potential side effects. No doubt, the possibility of severe allergic reactions and fatal blood clots is scary. Still, these risks are far less likely than becoming seriously ill or even dying from COVID-19. It sounds like a simple equation, but in actuality, it isn’t.
Many Canadians might recall last Spring when the National Advisory Committee on Immunization (NACI) released confusing recommendations relating to the AstraZeneca vaccine. In their release, NACI cautioned that people in certain age groups and living in certain regions might be better off waiting for an mRNA vaccine instead of taking the AZ option. This recommendation incited a great deal of confusion and public furor. Those who had followed public health guidance and received the AZ shot felt betrayed. Others living in COVID hotspots decided to wait for alternative products when vaccine supply was limited.
Herein lies the trouble: people are inherently bad at perceiving risk. On my drive up to receive my first dose, I recall wondering whether the risk of being injured in a traffic accident would be greater than the risk of a severe drug reaction. I anticipate it would have been, were those the lines of comparison to be drawn. The challenge with risk is that it is never “zero” and is highly dependent on context. We must define the scope for risk management and set criteria against which any single risk might be evaluated. For those of us in Toronto last spring, the risk of contracting COVID was high. Those living in rural communities on the East coast were far less likely to succumb to the illness, given low community spread in the region. Therefore, the NACI recommendations were reasonable, though most of us missed the vital nuance of context.
Of course, beyond this cognitive dimension lies an emotional one too. Regardless of how much we know and understand risks, how we feel about them often determines our decisions and behaviours. According to Paek and Hove, “Laypeople have been found to evaluate risks mostly according to subjective perceptions, intuitive judgments, and inferences made from media coverage and limited information.” Perception and personal experience play a huge role here. For example, do you know someone who “came down with the nasty flu,” or perhaps someone who is now living with “long hauler” syndrome due to a COVID-19 infection? Likewise, hearing a risk estimate that you have a 1 in 39 chance of dying from breast cancer is naturally much scarier than the same risk estimate for a skin rash. This is possibly the reason why so many people opted to wait for alternative vaccines (or take none at all). The thought of dying from a blood clot (though exceedingly rare) was scarier than “a nasty flu bug.”*
*COVID-19 is indeed quite 'nasty'; it's far more serious than seasonal influenza and a brief recap as to why can be found here.
“Laypeople have been found to evaluate risks mostly according to subjective perceptions, intuitive judgments, and inferences made from media coverage and limited information.”
(Paek and Hove)
So, how might we help patients better navigate risk? Providers can adopt a few strategies in the context of shared-decision making, and there’s undoubtedly room for designers to help too! For one, it’s important to remind people that all options confer some degree of risk; there is no such thing as a drug or treatment that carries none. Similarly, using absolute risk - the number of people experiencing an event in relation to the population at risk - is generally easier for people to understand. Last, we can close the numeracy gap by using visual aids and simple language to explain abstract numbers and rates.
Remind patients that all options confer some degree of risk; risk is never “zero.”
Frame risk as absolutes, rather than relative
Leverage visual aids and simple language to bridge the numeracy gap
Patient goal #2: Help me articulate my personal goals and evaluate options that are relevant to me
Some years ago, I worked on an initiative to help newly diagnosed prostate cancer patients navigate the treatment decision. Looking across the breadth of the prostate cancer journey, it was a moment that stood out as particularly trying and stressful for patients. There are usually several treatment options - from radiation to surgery to systemic treatment approaches - for which a patient is a candidate. All share similar survival rates, though each differs noticeably regarding the treatment experience, side effects, recovery process, and available rehabilitation and psychosocial support services. There really isn’t a “best” option, but there might be a “best for me and my goals” choice.
Our research indicated that, after completing treatment, many patients experience decisional regret. That is, looking back at their decision, they wish they had been better informed about the side effects and recovery pathway. Patients must carefully examine their own goals and expectations during the decision-making process and compare the available options to them accordingly. The trouble is that many patients don’t have a good sense of their treatment goals, let alone how they might prioritize them! Consistently, survival stands out as the top goal, but it’s not a useful comparator in a space where survival rates are comparatively similar. Further to that, the information that does exist about each treatment option is not formatted in a way that makes it easy for patients to compare, one to the next. It’s also true that when seeking information online, many patients will often happen upon options for which they are not even viable candidates.
“The trouble is, many patients don’t have a good sense for what their treatment goals might be, let alone how they might prioritize them!”
And so, our team prepared a solution. Working alongside our clinical research partners, we created a digital decision support tool. An interactive website helped patients prioritize realistic treatment goals and evaluate relevant easy-to-understand treatment option information. Patients were invited to organize a series of health goal “flashcards” from highest to lowest priority in the first step. Then, based on their response and their individual diagnosis, the tool would present all relevant treatment options, formatted in a way that enabled easy side-by-side comparison and according to the patient’s value prioritization. Our solution provided a framework to help people articulate their values and evaluate credible medical data accordingly.
For those of us endeavouring to improve shared decision-making processes, a few helpful principles are, therefore:
Help patients articulate and prioritize realistic health and treatment goals
Present information to patients in an easy-to-digest, comparable format
Ensure that patients have access to information that is relevant to their particular diagnosis, as many interesting options may not apply to their circumstance
Patient goal #3: Help me understand the basics about my body and my illness
Another critical gap in practical, shared decision-making is patients’ lack of foundational medical knowledge. Many lack a basic understanding of their bodies and vital processes, let alone the available treatments and how they work. This often makes it difficult for patients to interpret the information presented to them, even when the language has been simplified to suit a lay audience.
For example, patients considering immunotherapy as a cancer treatment must understand how the drug works and differs from chemotherapy. Immunotherapy relies on activating the body’s immune system to fight cancer cells, but what if you don’t know what an immune system is, let alone a T-cell? Communicating complex medical information is made altogether more challenging when considering the varying health literacy levels across the general population. While some may build off previous learnings and concepts, others will require additional support to backfill critical gaps in their understanding.
Physicians generally make efforts to translate complex information into a simple and easily understood format, but this isn’t necessarily their primary area of expertise. As discussed in my colleague Mathier Ranger’s article, we tend to fall into many “simplification traps” when translating complex scientific knowledge. Oversimplified explanations usually lack the adequate content depth to truly support understanding. Meanwhile, under-simplified explanations often require patients to invest a considerable amount of mental effort to unpack, increasing the likelihood of losing them altogether. Assessing a person’s knowledge and health literacy level and then building a conversation to suit their communication needs requires skill and time.
Meanwhile, it’s also quite common for people with lower health literacy to feel profoundly overwhelmed in this education process. The notion that they must now learn important concepts outside of their domain and take on the responsibility to participate in complex, high-stakes decision-making can be intimidating. Many folks instead prefer to defer to their physician. However, as alluded to in my previous prostate cancer example, this can sometimes lead to regret and dissatisfaction later on.
“The notion that they must now learn important concepts outside of their domain, and take on the responsibility to participate in complex, high stakes decision-making can be intimidating.”
Misinformation and misconception also play a significant role here. Years ago, I was involved in creating a patient starter kit and education materials for osteoporosis medicine. The drug contained bisphosphonates, which may cause irritation of the esophagus and stomach. Dosing instructions recommended that patients stay upright for 30 minutes after taking medication to prevent acid reflux. The pills themselves were to be taken once a month and came individually wrapped in a hefty card and plastic blister box. While the product did indeed have risks associated with it, most physicians understood that the risk of severe bone fractures was far more significant for their patients than the side effects if appropriately managed. However, in the wilds of the internet, many patients expressed concerns, citing that the product was dangerous and highly corrosive, “like drinking a ½ cup of draino.” While some base chemical elements were similar, it was a very different formulation and product! Still, many physicians complained about the impact of such misinformation on their ability to support their patients. Their concern: too much valuable time was being dedicated to “undoing” the misinformation rather than exploring patient values, risks, and benefits of the treatment. Therefore, our design team focused on building a patient resource that would help physicians engage patients by addressing misinformation head-on with validated information.
As such, it’s crucial to support patients by ensuring that they have access to credible, appropriate resources that can establish the foundational knowledge necessary to navigate complex discussions. A few principles to consider include:
Enable providers to assess a patient’s degree of health literacy and tailor their communications to suit individuals’ informational needs,
Help fill critical knowledge gaps by directing patients to appropriate resources that can explain key medical terms and concepts,
Address misinformation and any misconceptions that patients might have, related to care.
Patient goal #4: Help me navigate the healthcare system
Last, the complexity of the healthcare system itself can often hinder patients’ ability to engage in effective healthcare decision-making. Complex diseases such as cancer usually entail many different types of treatments and the coordination and collaboration between many other specialists. Patients are expected to become the “central hub” for their care, but they might not have the skills, time or energy to do so, mainly when sick! Treatment can be costly too, and in places such as the US, affordability and a patient’s ability to understand and navigate insurance and benefits significantly affect the decision-making process.
“Patients are expected to become the “central hub” for their care, but they might not have the skills, time or energy to do so, particularly when they are sick!”
I’ve worked on several patient support programmes and services in my career, explicitly designed to help patients and their families handle the administrative aspects of their disease. Often, these plans focus on insurance and connecting qualifying patients to programs and funding to cover care. Some go further to help patients understand their care pathway plan, identifying the various stakeholders and professionals along the care journey, their roles and responsibilities. This often helps patients understand what aspect of care each persona might be able to help them with and the limitations of others.
I recall some years ago learning about new treatments in psoriasis. Many new biologics showed promising results, offering patients greater skin clearance without the black box warnings carried by “older” medications such as methotrexate. However, to access these medications, patients would need to seek out specialist support. Most primary care physicians were not familiar or experienced with the newer drugs, and so it was not offered as an option in the patients’ decision set. Only by accessing specialist support might a patient become aware of the alternatives, but many were unaware that a separate specialty could be engaged!
Healthcare system navigation is highly complex, but a few items to consider when seeking to support patients might include:
Give patients access to their own medical health data; help them organize it centrally, and share it with members of their healthcare team
Look for ways to reduce the administrative burden of receiving care, help patients understand and maximize their health benefits. Connect them to support services that are relevant.
Help patients understand different healthcare professionals’ roles, domain knowledge, and limitations and how they might help.
Make the care pathway tangible and visual; help patients know what to expect in their journey and how they will engage with the system at large.
As a service designer, I firmly believe that we professionals who represent the institutions, organizations and roles within the healthcare system are responsible to the patient. Giving them a forum to express their views is critical, but not enough. Instead, we need to direct them to the most important conversations to their wellness, help them surface personal goals, and fill gaps in knowledge, literacy, and numeracy that might limit their ability to navigate complex trade-off decisions. These discussions may, after all, be some of the most personal, high-stakes conversations that a person can face in their lives! I hope that by considering the role of risk perception, health literacy, goals, and system navigation, your approach to driving shared decision-making will be all the more successful!