Every healthcare organisation wants to put patients at the centre of what it does. The phrase appears in strategies, values, project plans and presentations across the industry. Yet patient engagement in healthcare can still become separate activities, not a consistent way of thinking.
Teams hold an advisory board, circulate a survey, test a concept or gather feedback before launch. Each activity can provide useful insight, but meaningful patient engagement goes further.
It requires us to understand the whole person. We need to know about their life and treatment journey. We also need to consider the wider realities that shape their choices, behaviour, and outcomes.
At Kanga, we return to one simple philosophy: walk in their shoes.
Walking in patients’ shoes means designing healthcare services, messages, and support around real life.
It should not focus only on clinical pathways or the healthcare organizations processes. It means involving patients early. It also means listening to more experiences. Use these insights to shape decisions throughout development.
Patient engagement in healthcare must reflect real life
A patient pathway helps us understand what happens clinically. It can show the stages of diagnosis, treatment options and treatment plan, follow-up and ongoing care plan.
However, it rarely captures everything happening around those moments.
A pathway may not show a parent managing treatment around school pick-ups. It may not show a person worrying about taking more time off work. It may not show a carer trying to remember everything discussed during an appointment.
Nor does it always show the anxiety before a consultation. It may not capture the exhaustion that follows. It may not show the uncertainty after someone leaves the clinic.
Patients experience healthcare alongside work, family, relationships, finances, caring responsibilities and everything else that makes up daily life. They do not experience it as a neat sequence of touchpoints.
That is why some of the richest patient insights emerge between appointments, not only within them.
By exploring patient experiences, healthcare teams can find gaps in support, patient interactions and poorly timed information. They can also spot small barriers that affect confidence, engagement, or treatment decisions. Customer journey mapping helps teams connect clinical, emotional, and practical moments.
It prevents teams from seeing each interaction in isolation.
Start with the whole person, not the condition
No two people experience the same diagnosis in exactly the same way.
Health literacy, culture, language, income, and family circumstances can shape how someone responds to support.
Digital access, including social media, can also influence how they respond.
Confidence and past healthcare experiences can affect their response too.
One person may want detailed information and the opportunity to explore every available option. Someone else may feel overwhelmed and need short, clear guidance at specific moments. While one patient may have a strong support network, another may manage their condition largely alone.
Broad personas and assumed journeys can help teams identify common needs, but they cannot replace direct patient insight. Effective patient engagement in healthcare recognises the condition as only one part of a person’s life.
This broader view also helps teams create more inclusive experiences. Rather than expecting everyone to follow the same journey, organisations can respond to different needs, circumstances, and support levels.
Design healthcare services around people’s lives
Healthcare organisations frequently design services around current systems, in-house teams, and ways of working. From inside the organisation, the resulting structure may seem entirely logical.
Patients can experience something different.
They may need to visit several websites. They may need to share the same information with different teams. They may need to search through a lot of content to find one relevant answer. Information may arrive at the wrong time, through an unsuitable channel or in language that feels unclear.
Walking in patients’ shoes changes the starting point. Instead of beginning with what the organisation wants to deliver, teams begin with what the person needs and experiences.
What may stop them from taking the next step? How much information can they absorb at this point? Identify anyone else involved in the patient’s care or decisions. What would make the experience simpler, clearer or more reassuring?
These questions can reveal needs that an organisation may otherwise miss. They also help teams create services and communications that fit more naturally into daily life and builds trust.
The goal should not be to help patients fit more effectively into our systems. We should create systems that work more effectively for patients.
Kanga’s approach to digital strategy and multichannel planning starts with insight and co-creation.
This helps organisations build experiences around real customer and patient needs.
Co-creation strengthens patient engagement in healthcare
Patient consultation asks people to respond to an idea. Patient co-creation gives them a meaningful role in shaping the idea itself.
Too often, teams invite patients into the process after making the key decisions. By then, they have developed the concept, agreed the structure and created much of the solution. Patient feedback can still improve the result, but it cannot easily change the project’s direction.
Co-creation begins at an earlier stage.
Patients can help teams identify unmet needs, question assumptions and explore the problem before anyone decides on a solution. They can generate ideas, respond to early concepts, test prototypes and refine services as they develop.
An important difference exists between these approaches. Patients can review an answer or help define the question.
The first approach may improve an existing idea. The second helps the team establish whether it has focused on the right problem from the beginning.
NICE bases its approach to patient and public involvement on giving patients, carers, and the public a chance to take part.
Patients can contribute. Carers can contribute.
Members of the public can contribute. They help shape its guidance and services. NICE also recognises that this involvement makes its work more relevant to the people most directly affected.
At Kanga, we have seen the value of co-creation in rare disease patient support.
Patients and families can reveal gaps and needs that clinical pathways may miss.
Show patients contributing from discovery to testing and refinement.
Hear the voices that are often missing
Meaningful patient engagement depends not only on listening, but also on understanding who has the opportunity to speak.
The easiest people to recruit may not represent everyone living with a condition. Confident, digitally connected patients who feel comfortable in formal discussions often become more visible, while others remain absent.
Language, culture, health literacy, and access to technology can affect participation. Time, confidence, and past healthcare experiences can also affect it.
Reaching more patients may need flexible recruitment, different ways to engage, and several ways to contribute. Organisations may need to work with trusted community groups.
They may provide translated materials. They may offer online and offline options. They may also create less formal settings for discussion.
This additional effort matters. When healthcare organisations only engage with people who are easy to reach, they risk leaving others out. Services may work well for a small group.
The NHS England approach to patient and public involvement links meaningful participation with efforts to reduce unfair health differences. This reinforces the need to seek perspectives beyond the most visible or easily recruited participants.
Teams should also consider the wider network around each patient. Carers, family members and friends often help people manage treatment, interpret information and make decisions. Their experiences can reveal practical and emotional needs that a clinical pathway may overlook.
Turn patient insight into meaningful action
Patient insight only creates value when it changes what happens next.
Teams may spend a lot of time gathering and sharing findings. But that insight can lose visibility as the project moves on. A report or presentation may document the research, but it will not improve patient experience unless people use it.
Strong patient engagement in healthcare should influence work across strategy, medical, marketing, communications, digital, access and service design. It should shape priorities, content structures, channel choices and measures of success.
One question can help every team keep the patient perspective visible:
Does this decision reflect the reality of the people we are trying to support?
Teams should return to this question throughout the project rather than only during the initial research phase. It turns “walk in their shoes” from a phrase into a practical design principle.
For organisations that want to use this thinking more widely, customer experience strategy can help. It connects insight, design, data, and capability across teams.
What does walking in patients’ shoes mean in practice?
Walking in patients’ shoes means involving people early enough for their experiences to influence the outcome.
It requires teams to understand the emotional, social and practical realities surrounding treatment, not only the clinical stages. Organisations also need to listen to patients, carers, and people whose voices others often miss. They should not rely only on the most visible voices.
Most importantly, teams must remain willing to change direction.
Listening is only meaningful when the insights gained shape what the organisation creates. In practice, you might simplify a service.
This may involve changing when you share information, using a different way to communicate, or viewing the problem differently.
The outcome does not always need to involve more content, technology or engagement activity. Sometimes the most patient-centred decision involves making something simpler, clearer or easier to access.
From patient engagement to genuine partnership
The future of patient engagement in healthcare does not depend on running more surveys, workshops or advisory boards. It depends on building stronger partnerships.
