One of four pillars of Patient Engagement is shared decision-making. This is a focal point of patient-centred care, whereby healthcare decisions should ideally be a collaborative process between patients and providers. Patients must feel empowered to express their preferences, values, and concerns, while doctors should integrate these factors into their treatment recommendations. This is the central tenet of patient-centred care that is found in health care policy worldwide.

However, in reality, many patients have to struggle with barriers that hinder and even cancel out any scope for patient-centred care. Addressing these challenges, which range from time constraints to financial transparency, is essential for any kind of Patient Engagement to work.

Time Constraints and Power Imbalance

Doctors often have limited consultation time, making meaningful discussions difficult. In the UK in the public system (NHS), this is around 10 minutes (30 minutes in the private sector, but much of this is – I’m sorry to say – cr*p, involving not much substance, a lot of small talk and padding the consultation out – more on this in a future article). Our colleague Burak Savci from Türkiye wrote an article for this blog stating that doctors in Türkiye are under pressure to see up to 250 patients a day. In an 8-hour day, this would be 1 minute 55 seconds with each patient. Imagine the waiting room… Short appointments lead to rushed decisions. There is little time for patients to be appropriately informed about their treatment options.

Where is the patient-centred care?

Furthermore, a power imbalance exists in many doctor-patient relationships. Some doctors adopt a paternalistic, ‘talking-down-to-you’ approach, assuming they know best without fully considering the patient’s perspective. In some cultures, this is what is expected in a clinical consultation. Patients may feel discouraged from asking questions or advocating for themselves, fearing dismissal or judgment. This is not a collaboration, and, despite policy rhetoric, this is how health care is delivered for the majority of people.

Implicit Bias and Healthcare Disparities

Marginalised communities frequently experience disparities in shared decision-making. Factors such as socioeconomic status, race, and gender can influence how patients are heard and treated. Implicit bias leads to some groups receiving less personalised care, feeling dismissed, or being excluded from decisions relating to their own health. Reducing these biases would require systemic change and this starts with the acknowledgement from the health care providers that this is happening. This is difficult when it is so embedded into the subconscious.

Health Literacy

Understanding one’s health condition is essential for proper treatment adherence and self-care. However, healthcare systems often assume a high level of health literacy, leading to the following communication gaps:

Assumed High Literacy Levels: Many medical documents use complex terminology that is difficult for patients with limited education to understand.

Cultural and Language Barriers: speakers of languages other than the mainstream language, e.g. English in the UK, and culturally diverse individuals may struggle to understand medical information. This has an immediate effect on health outcomes, such as a lack of compliance to spoken health advice, such as lifestyle, or prescribed medication regimes.

Lack of Personalised Education: Generic, one-size-fits-all health materials fail to address individual patient concerns, limiting their effectiveness. In clinical waiting rooms around the world, written materials for patients gather dust from one year to the next. Tailored education, based on a patient’s condition, learning style, and background, improves engagement and health outcomes. Do health professionals have the appetite to provide this?

Technology should enhance patient engagement, yet many barriers prevent it being used effectively. First, there is the Digital Divide, even in today’s tech-driven, tech-enabled world. Older people, people with low-incomes, people in remote, rural areas often lack internet access or have little to no digital literacy. This limits their ability to benefit from ehealth services. In many countries, the political agenda is to push all public services to be delivered electronically.

Secondly, for people who are digitally literate, there is often unfavourable user experiences. Many health apps and portals are difficult to navigate, discouraging consistent use. UX design is all well and good, but UX Testing is of utmost importance before deploying a health technology and afterwards.

Then there are privacy concerns: Patients worry about data security. This can lead to user reluctance to adopt digital health tools. Trust and participation can be forged through simple communication – the truth - about security measures.

Emotional and Psychological Support can be lacking in health professional-patient interactions. This is because of poor joined-up thinking. Mental and physical health is often seen as separate from physical, biomedical health. It can also be because of the patient’s reticence to seek mental health advice and support due to stigma, which can be governed by cultural rules. For those that do disclose mental health concerns, they may find referral help is inaccessible due to long wait times, or shortages in providers. This can cause fragmented care, being caught up in the machinery of bureaucracy and then there is the patient’s burden: individually bearing the responsibility of coordinating their own care. Waiting lists in any health service kills any possibility of Patient Engagement.

In the US, there is also the financial burden, which is a significant barrier for many patients to the entire notion of empowerment. Just under 10% of Americans have no insurance. Half of Americans of working age struggle to afford health care and over one third are in medical debt. Again, health literacy, or in this case, insurance literacy is the issue, where people in the USA routinely receive unclear medical bills, and unpicking complex insurance policies: deductibles, copays, coverage limitations and being put under unexpected financial strain. In UK, as we are more likely to move towards a two-tiered health care system, this will be a shock to the system.

To reiterate, all of these barriers erode and drown meaningful engagement. We have to wonder, who exactly is the empowered, engaged patient that policymakers around the world love to describe. I ask because it seems like a great number of people are not.

True patient-centred health care needs systemic improvements in education, digital access, emotional support, care coordination, and financial transparency. Addressing these challenges will create a better, more equitable system that creates more optimal conditions for patient-health professional collaboration and improves health outcomes. This can be extended to patient-institution / organisation collaboration.

Thank you for reading!

Mark Gibson

Boston, USA, November 2024