What Does It Actually Mean to Be Patient-Centred?

Georgina Watson

Oct 20

13 min read

Looking beyond healthcare buzzwords to what patients genuinely need.

There are certain phrases in healthcare that appear absolutely everywhere.

Holistic care.

Shared decision-making.

Patient empowerment.

And, of course:

Patient-centred care.

You'll find it in hospital strategies, research proposals, conference presentations, policy documents and probably on an inspirational poster somewhere near a hospital reception desk.

It sounds wonderful.

Who wouldn't want healthcare to be centred around the patient?

But I've been thinking about something.

If healthcare is supposed to be patient-centred, why do patients sometimes feel like the least important people in the conversation?

And perhaps an even more important question:

What does patient-centred care actually look like when somebody is sitting in front of you, frightened, unwell and trying to understand what happens next?

Because I suspect the answer involves considerably more than putting the words patient-centred into a mission statement.

First, what does patient-centred care mean?

The principle is relatively straightforward.

Healthcare should recognise that the person receiving treatment is more than a diagnosis, a collection of symptoms or a set of test results.

They have a life.

Preferences.

Responsibilities.

Fears.

Relationships.

Ambitions.

And opinions about what happens to their own body.

NHS England's approach to personalised care emphasises giving people choice and control over how their care is planned and delivered, taking account of their individual needs, strengths and priorities.

In other words, healthcare shouldn't simply ask:

“What's the matter with you?”

It should also ask:

“What matters to you?”

Those two questions may sound similar.

They aren't.

The first helps identify a medical problem.

The second helps us understand the person who has to live with it.

And good healthcare needs both.

Being listened to isn't a luxury.

Let's start with something remarkably basic.

Listening.

Not waiting for somebody to stop talking so you can ask the next question.

Not deciding what their symptoms mean before they've finished describing them.

Not assuming that because their test results look reassuring, there is nothing more to understand.

Actually listening.

The General Medical Council's guidance on decision-making and consent recognises the importance of listening to patients and giving them the information and support needed to make informed decisions.

And yet listening can sometimes be treated as a particularly generous extra.

As though allowing somebody to explain their own experience is an optional courtesy rather than a fundamental part of understanding what is happening.

Patients aren't always going to describe symptoms using the correct medical terminology.

They may struggle to explain an unfamiliar sensation.

They may become emotional.

They may forget something.

They may describe a change that doesn't fit neatly into the question being asked.

That doesn't make their contribution irrelevant.

The patient is the person experiencing the problem.

Their account is an important part of the clinical picture.

And sometimes the most useful thing a healthcare professional can do is allow somebody enough time to finish a sentence.

Why should a man's presence make a woman's voice more credible?

There's another aspect of being listened to that I think deserves attention.

Gender bias in healthcare.

Women have long described having their pain minimised, their symptoms questioned and their concerns dismissed. These experiences raise important questions about gender bias in healthcare: whether assumptions about women influence how their symptoms are interpreted, how seriously their concerns are taken and the treatment they receive.

Research has identified disparities between female and male patients in pain management. However, identifying a difference does not, by itself, establish whether it arises from biological factors, social assumptions, clinical practices or a combination of these influences.

For example, a 2024 study published in PNAS, examining emergency department records, found that female patients reporting pain were less likely than male patients to receive pain medication.

But there's another experience that deserves examination.

Why do some women feel they are taken more seriously when a husband, father, brother or male partner accompanies them to an appointment?

It's an uncomfortable question.

A woman may explain her symptoms, describe their impact and ask for help, only to feel that her concerns haven't been fully acknowledged.

Then a male relative repeats what she has already said.

Suddenly, she feels that somebody is listening.

Of course, an accompanying relative can be enormously helpful regardless of gender.

They may remember important details, provide emotional support or help communicate information when somebody is exhausted or distressed.

And we should be careful not to assume that every clinician responds differently simply because a man is present.

But when women describe feeling that their concerns acquire greater credibility once a man speaks on their behalf, we ought to be willing to ask why.

Why should the same symptoms sound more convincing when somebody else describes them?

The problem isn't that men shouldn't advocate for the women they love.

They absolutely should, when that support is wanted.

The problem is the possibility that a woman's own account may not always be afforded the same weight.

Women shouldn't need a male witness to establish that their pain matters.

They shouldn't need somebody else to confirm that their symptoms are affecting their lives.

And they certainly shouldn't feel obliged to bring a husband, father or partner to an appointment simply to be heard.

Support should strengthen a patient's voice, not become a prerequisite for believing it.

If patient-centred care means anything, it must mean that a woman's concerns deserve serious, respectful consideration whether she arrives with her husband, her mother, a friend or entirely on her own.

Because the person who needs healthcare should not have to borrow somebody else's credibility to receive it.

When my family had to become my voice.

This is something I understand from personal experience.

When I was incredibly poorly, my brother, my dad and my mum became my voice.

Not because I didn't have concerns of my own. Not because I didn't understand that something was seriously wrong with my body. But because, despite trying to communicate those concerns, I didn't feel that I was being listened to.

As my health deteriorated, my family found themselves having to speak up for me, question decisions and advocate for the care I desperately needed.

They became my advocates at a time when I was increasingly unwell and vulnerable.

I am extraordinarily grateful that I had them beside me. Their determination to support me meant more than I can adequately express.

But I've often wondered what might have happened if they hadn't been there.

What happens to the woman who arrives at hospital alone?

The woman who doesn't have a father, brother, mother or partner able to challenge decisions or ask difficult questions?

The woman who is too exhausted, frightened or unwell to keep explaining that something is wrong?

And why should anybody need their family to fight so hard simply to ensure their concerns receive proper consideration?

I don't believe my experience means every healthcare professional dismisses women, nor that having a male relative present automatically changes the care somebody receives. My mum advocated for me just as fiercely as my dad and brother.

But it does make me question a healthcare culture in which patients and their families can sometimes feel that being heard requires persistence, confidence and the ability to challenge authority.

My family should have been able to concentrate on supporting me through my illness. Instead, they also had to fight to make sure my voice was heard.

And that, to me, raises one of the most important questions about patient-centred care.

If a patient needs somebody else to fight for their voice to matter, how patient-centred is that care? I think "not very" is the answer.

The patient knows something the clinician doesn't.

I think this is where the conversation becomes particularly interesting.

Healthcare professionals possess knowledge that patients may not have.

They understand anatomy, physiology, disease, investigations and treatment.

That expertise is enormously valuable.

But patients possess another kind of knowledge.

They know what their symptoms feel like.

They know what has changed.

They know what they can and cannot manage in everyday life.

They know which consequences of treatment they would find acceptable.

They know what they are frightened of losing.

And they know what they hope to gain.

NHS England's guidance on shared decision-making recognises these two forms of expertise: the clinician's knowledge of treatment and the person's knowledge of themselves, their circumstances and their values.

Neither makes the other redundant.

Patient-centred care happens when those two forms of knowledge are allowed to work together.

It doesn't mean patients have to become doctors.

And it doesn't mean clinical expertise should be disregarded.

It means recognising that understanding a disease and understanding what living with that disease means are not necessarily the same thing.

A successful treatment isn't always the whole story.

Imagine somebody undergoes treatment.

The procedure is technically successful.

The scans look good.

The laboratory results improve.

From a clinical perspective, the outcome may be excellent.

But what if the person is still struggling?

Perhaps treatment has affected their independence.

Perhaps they are experiencing persistent discomfort.

Perhaps their ability to work, travel, socialise or maintain relationships has changed.

Perhaps the treatment achieved exactly what it was supposed to achieve medically, but the person now needs help adjusting to its consequences.

Can healthcare call that a success and consider the job finished?

Sometimes the answer will depend on what was realistically achievable and what the patient hoped treatment would accomplish.

And that's precisely why those conversations matter.

NHS England's personalised care and support planning guidance encourages healthcare professionals to consider people's wider lives and agree goals that are meaningful to them.

Because a medical outcome and a personal outcome are related, but they aren't always identical.

A person might not simply want their symptoms reduced.

They might want to sleep through the night.

Go swimming.

Return to work.

Travel without fear.

Have a relationship.

Or manage an ordinary day without their condition occupying every waking thought.

Sometimes the most meaningful outcome isn't a number on a test result.

It's getting a little bit of life back.

Shared decision-making means sharing the decision

Another phrase that sounds excellent in theory.

Shared decision-making.

But what does it mean in practice?

It means that when there are reasonable options, patients should receive information about their potential benefits, risks, consequences and alternatives.

And then they should be supported to consider those options in the context of their own lives.

NICE guidance on shared decision-making (NG197) recommends discussing what the person hopes to gain from treatment, explaining the available options and recognising that patients may weigh risks and benefits differently from healthcare professionals.

This is important.

Because two people with the same condition might make different decisions.

One person may prioritise avoiding an operation.

Another may consider surgery worthwhile because of the potential improvement in their quality of life.

One may prefer to continue conservative management.

Another may place greater importance on pursuing a different treatment approach.

Neither decision can be understood properly without knowing what matters to the person making it.

And there is a significant difference between:

“We've decided what is best for you.”

and:

“Let's discuss what the options mean for you.”

Patient-centred care doesn't mean patients can demand any treatment regardless of the evidence.

It means they should be genuinely involved in decisions between clinically appropriate options.

Patients shouldn't have to become project managers

Now, this is something I think deserves far more attention.

Healthcare can be extraordinarily complicated to navigate.

Appointments.

Referrals.

Prescriptions.

Test results.

Different departments.

Different specialists.

Different hospitals.

Letters that arrive after the appointment they were supposed to explain.

And occasionally the fascinating discovery that one department has absolutely no idea what another department is doing.

For somebody managing a long-term condition, coordinating healthcare can begin to resemble an unpaid administrative position.

Except the person doing the administration is also the person who is unwell.

That seems like a fairly important design flaw.

Patient-centred care should consider the burden of navigating the system itself.

Does somebody know who to contact when something changes?

Do they understand what happens next?

Are different professionals communicating?

Is there a coherent plan?

Does the person have to repeat their medical history at every appointment?

Are they being asked to coordinate information that should already be available to the professionals caring for them?

NHS England's personalised care and support planning framework places particular importance on joined-up planning, meaningful goals and involving people in developing and reviewing their care.

Because a patient-centred service shouldn't simply give somebody more responsibility and call it empowerment.

Sometimes empowerment means removing unnecessary work from the patient.

Accessibility is part of being patient-centred.

Not everybody can engage with healthcare information in the same way.

Some people struggle with hearing.

Others with sight.

Some experience fatigue.

Pain.

Cognitive difficulties.

Language barriers.

Problems processing large amounts of information.

Or simply the overwhelming experience of receiving frightening news.

Handing somebody six pages of information and asking whether they understand it doesn't necessarily mean the information has been communicated effectively.

NICE recommends presenting information in manageable sections, checking understanding and adapting communication to individual needs. Its shared decision-making guidance also recognises the importance of accessibility and allowing people to involve family members, friends, carers or advocates if they wish.

Read NICE's recommendations on communication and shared decision-making.

Sometimes a person needs written information.

Sometimes they need diagrams.

Sometimes they need more time.

Sometimes they need information repeated.

Sometimes they need an opportunity to go away, think and return with questions.

And sometimes they need somebody to recognise that being unwell can make an already complicated conversation much harder to follow.

Making information accessible isn't lowering the standard of care.

It's helping somebody participate in it.

Kindness matters. But kindness isn't the whole thing.

I want to be careful here.

Because healthcare professionals work under enormous pressure.

Time is limited.

Resources are stretched.

Decisions can be difficult.

And there are many compassionate, thoughtful professionals who work extraordinarily hard to provide good care.

Patient-centred healthcare isn't about pretending those pressures don't exist.

But neither should kindness become a substitute for meaningful involvement.

A clinician can be perfectly pleasant while making a decision without properly involving the patient.

A consultation can feel friendly while leaving somebody unclear about what happens next.

And a patient can feel grateful for the kindness they received while still having legitimate concerns about their care.

Being nice and being patient-centred are not necessarily the same thing.

The ideal, of course, is both.

Compassionate communication.

Sound clinical judgement.

Honest discussion.

Appropriate investigation and treatment.

And meaningful involvement in decisions.

Being believed doesn't mean never being questioned.

This distinction matters too.

Patient-centred care does not require healthcare professionals to agree with every interpretation a patient offers.

Medicine involves uncertainty.

Symptoms can have multiple possible explanations.

A patient's suspected diagnosis may turn out to be incorrect.

A particular treatment may not be appropriate.

And sometimes the evidence simply isn't sufficient to reach a conclusion.

But there is a difference between questioning a diagnosis and dismissing a person.

A clinician can say:

“I'm not sure that explains your symptoms.”

without saying:

“There is nothing wrong.”

They can explain why an investigation may not be appropriate.

They can discuss uncertainty.

They can acknowledge that a symptom is real and distressing without pretending to know its cause.

Respecting the patient's experience doesn't require abandoning clinical judgement.

It requires using that judgement thoughtfully, transparently and with appropriate curiosity.

Because an unexplained symptom is not the same thing as an unimportant symptom.

What happens when the patient disagrees?

Here's a useful test of how patient-centred a system really is.

What happens when somebody says:

“I'm not comfortable with that plan.”

Or:

“I'd like to understand the alternatives.”

Or:

“I don't think this addresses what I'm experiencing.”

Is that treated as a reasonable part of a healthcare conversation?

Or as an inconvenience?

Patients should be able to ask questions.

They should be able to express uncertainty.

They should be able to explain why a particular option doesn't feel right for them.

And they should be able to seek clarification without feeling that they have somehow become a difficult patient.

The GMC's seven principles of decision-making and consent establish the importance of meaningful dialogue, listening and supporting patients to make informed decisions.

That doesn't mean every disagreement will be resolved in the patient's preferred way.

But it should mean that disagreement can be explored respectfully.

A patient shouldn't have to agree with everything to deserve good care.

And what about patients shaping healthcare itself?

So far, we've been talking about what happens inside a consultation.

But patient-centred healthcare shouldn't stop at the consulting-room door.

Patients also have something to contribute to how healthcare services are designed, how research questions are chosen and how outcomes are measured.

This is where patient and public involvement and engagement (PPIE) becomes particularly important.

There is a difference between researching patients and involving patients in research.

Researchers may want to know whether a treatment reduces symptoms.

Patients may also want to know whether it makes daily life easier.

Whether it reduces the burden of appointments.

Whether it affects independence.

Whether it is tolerable over time.

Whether the outcome being measured is actually the outcome that matters most to them.

Those aren't competing priorities.

They can make research more relevant.

But meaningful involvement requires more than inviting somebody to a meeting, thanking them for their perspective and continuing exactly as before.

It means creating opportunities for lived experience to influence decisions.

It means making involvement accessible.

It means recognising people's time and contributions.

And it means being willing to explain how their input has — or hasn't — affected the work.

Patients shouldn't simply be present in the room.

Their presence should have a purpose.

Sometimes the most important question is the simplest.

I wonder whether we occasionally make patient-centred care sound more complicated than it needs to be.

There are frameworks.

Standards.

Training programmes.

Strategies.

Implementation plans.

And a truly impressive number of diagrams involving overlapping circles.

All of these may have their place.

But perhaps the most useful starting point is something rather ordinary.

“What matters most to you?”

Not:

“What do we think should matter to you?”

Not:

“Which of our existing services would you like?”

But:

“What are you hoping we can help you do?”

The answer might be something clinical.

Relief from pain.

Fewer infections.

Better symptom control.

A diagnosis.

But it might also be something deeply personal.

Being able to go out without worrying.

Sleeping.

Working.

Spending time with family.

Feeling safe in their own body.

Or simply understanding what is happening to them.

That information doesn't replace clinical expertise.

It gives clinical expertise a direction.

So what does patient-centred care actually mean?

I don't think it means promising every patient a perfect outcome.

I that a perfect outcome is something healthcare cannot guarantee. Just look back to what I wrote on non-malificence in the post titled "Do No Harm is a myth."

It doesn't mean every treatment will work.

It doesn't mean every request can be fulfilled.

And it certainly doesn't mean clinicians should abandon evidence or professional judgement.

But I think it should mean something quite clear.

Listen to the person.

Take their symptoms and concerns seriously.

Explain what is known and what remains uncertain.

Recognise their expertise in their own experience.

Give them information they can actually understand.

Involve them in decisions.

Consider how treatment will affect their life, not simply their disease.

Coordinate care wherever possible.

Make reasonable adjustments when people need them.

And remember that the person sitting in front of you has an existence beyond the healthcare system.

Because nobody's ambition in life is to become an excellent patient.

Nobody dreams of becoming particularly skilled at chasing referrals, interpreting clinic letters or remembering the extension numbers of hospital departments.

People want to live.

To work.

To love.

To travel.

To make plans.

To feel well enough to think about something other than their health.

And when illness interrupts those things, healthcare should ideally help people preserve or regain as much of that life as possible.

Perhaps that's what patient-centred care really means.

Not simply treating the condition somebody has.

But remembering the life they are trying to live.

And perhaps the next time we see the phrase patient-centred care in a strategy document, we should ask a rather practical question:

Would the patient recognise themselves at the centre of it?

Because if the answer is no, perhaps we still have some work to do.

Oui. Together, we can. 💛

A note from Oui

Oui is an independent urinary health awareness initiative that aims to make conversations about healthcare, research and lived experience more accessible.

This article discusses general principles of patient-centred care, shared decision-making and patient involvement. It is not intended to provide individual medical or legal advice.