Patient Perspective: Why Patients are the Route to Real Results

12 Feb 2026

Patient representative, Sadia, tells us why patient voice and data must shape healthcare improvement.

When Sadia first came across HQIP’s Service User Network (SUN), she wasn’t particularly looking for a new commitment – but she was keen to make a difference. Having taken part in patient engagement activities for a local research initiative previously, she was ready to contribute to something broader; something that would have national impact. What she found was a community where her voice – and the voices of people like her – could help shape the quality of healthcare across the country for everyone. Here she explains why patient involvement is important, and why it goes hand in hand with sharing healthcare data.

We’re the ones receiving the care. We’re the only ones who can tell you if it’s working or not” 

“When I saw the SUN network, it sounded exactly what I was looking for.” What stood out to her first was the tone of the advert: welcoming and flexible. “It said I could be involved as much or as little as I wanted. That really reassured me; it meant that I could contribute as and when I was able.” She signed up immediately. It was the beginning of a relationship that brought benefit to HQIP’s programme of national clinical audits as well as wider healthcare. It was also a relationship that saw Sadia develop her understanding of the value of patient voice, and the use of data, in changing healthcare for the better.

Why patient voice matters

For Sadia, the case for involving patients in healthcare improvement is simple and powerful. “We’re the ones receiving the care. We’re the only ones who can tell you if it’s working or not.” She has seen first-hand how involving patients early can prevent problems later on, and save time and effort. “If you include patients in discussions around care initiatives, they’ll spot issues before you roll them out – and they’ll help you to fix them. It makes care relevant, more efficient, and ultimately supports staff too.”

Improving care for everyone

Sadia, who has premenstrual dysphoric disorder (PMDD, a condition that took 12 years to be diagnosed), speaks candidly about her healthcare journey. As a British-South Asian woman under 30, she has faced many assumptions about her and her care. But change, she says, is happening. In her case, she connects this directly to women’s involvement. “When I was growing up, most research was done by men, for men, about men. Now we’re seeing much more research led by women, and that is focused on women’s health – and the involvement of female patients has played a key role too.” She believes that change has been possible in part because patients have demanded to be part of the solution: “We go through this, you should be studying us with us.”

I can see that sharing [anonymised] data is an important part of creating better services and outcomes” 

Today, when she visits her doctor, they immediately know what PMDD is and what emerging treatments are being explored. “It gives me hope. Five or ten years ago, that wouldn’t have happened, and I’m grateful – not just for me, but for all the others with my condition.”

How data shapes better care

Sadia is open about once feeling hesitant about consenting to sharing her health data. “Healthcare hasn’t always focused on people like me, so I was unsure if it would be of benefit. But, through being involved with HQIP, I can see that sharing [anonymised] data is an important part of creating better services and outcomes.” For her, data and patient voice are equally important: “You need both to understand how care is working and where improvements are needed.” She also sees data sharing as essential to equity. “If someone like me doesn’t share my data, there won’t be relevant information to shine a light on conditions that affect people like me.”

What does patient engagement mean in practice?

Since joining HQIP’s Service User Network (SUN), Sadia has taken part in a wide range of activities, including reviewing reports, contributing to the development of resources, speaking at conferences, and generally offering insights based on both her personal experiences and those of people for whom she cares. “My father has cardiovascular disease, and I have been able to contribute, not just as a patient but also as a carer. Being able to bring that perspective into a meeting, and see it valued, was fantastic.”

If you’re listening to your patients, you’re going to get things right more often” 

The variety of opportunities is something she genuinely appreciates. “I feel like I’ve only touched the surface, in terms of what I could get involved in. But the great thing is, if you aren’t selected for one opportunity, another comes along quite soon. It is always very rewarding.”

A shared journey to continuous improvement

While Sadia says that she wouldn’t have chosen to go through the healthcare journey she has, she recognises that it does put her in a unique position of being able to benefit others, through patient engagement. “It did lead me to something meaningful,” she reflects. She is comforted that she is helping to shape a healthcare service that listens, learns, and improves.

For HQIP, Sadia’s story embodies exactly why patient involvement is critical for patient-centred, evidence-informed improvement in care. It deepens understanding. It ensures relevance. And, ultimately, it leads to care that meets the needs of real people. Or, as Sadia puts it: “If you’re listening to your patients, you’re going to get things right more often.”

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