You do not need to wait until something goes wrong to take control of things. There is real value in understanding your numbers, like your heart rate, blood pressure, and body composition, whilst you still feel healthy. These insights empower you to make adjustments before anything becomes a serious concern. By regularly reviewing my health data, I ensure I am giving myself the best chance to maintain long-term wellness.

I take my health seriously. I want to keep my metabolic rate up, shift the classic midlife paunch, and stay ahead of any hidden risks. This is especially true when you see friends starting to face serious health challenges like MS. It forces you to look after yourself. But I have a confession: I am also inherently lazy.

If a health routine requires me to manually write down numbers, open an app to type in a reading, or log data into a spreadsheet, I will stop doing it within four days. I simply do not have the patience to take a measurement and manually input it into an account. I am lazy with things like that.

Why I Track My Health

As someone who generally feels perfectly healthy, it might seem unnecessary to track things like heart rate and blood pressure regularly. However, many health conditions develop silently. High blood pressure typically does not present any obvious symptoms until it becomes severe. In fact, research shows that many people with high blood pressure are completely unaware of their condition, which increases the risk of heart disease and stroke over time.

By regularly monitoring my own health, I can catch these subtle changes early. A slight increase in blood pressure might be a sign to slow down, manage stress, or adjust my diet. Similarly, noticing fluctuations in my heart rate could indicate the need for more consistent exercise or improved sleep. Staying informed about these key numbers allows me to make small adjustments before anything escalates.

Over time, I have been able to observe how my heart responds to different types of exercise and daily activities. This knowledge helps me refine my fitness routine, ensuring I am getting the benefits without overexerting myself.

The Fix for Manual Paperwork

That laziness is exactly why my current setup actually works. To keep track of my health without creating extra chores, I use several devices that provide accurate data. These tools do not just deliver random numbers; they offer insights into how my body is functioning daily.

• The Wearable Tracker: This device tracks my heart rate and daily steps. Knowing how my heart behaves during both rest and activity gives me a clear picture of my cardiovascular health. I notice patterns, such as how my heart rate recovers after exercise, which indicates overall fitness.
• The Blood Pressure Monitor: This allows me to check my blood pressure at home regularly. I no longer have to rely on annual doctor visits to ensure my blood pressure is within a healthy range. Even slight fluctuations in blood pressure provide early warnings of stress or lifestyle factors that need adjusting.
• The Smart Scales: These go beyond just measuring weight. They track body composition, including fat percentage and muscle mass. They also provide a reading of my vascular age, which is a measurement of how healthy my arteries are. This is a key factor in long-term cardiovascular health.

The main benefit here is that they sync directly to my Patients Know Best (PKB) account in the background. The data moves where it needs to go without me lifting a finger. The results are in my account next time I log in.

Consistency matters far more than clinical perfection here. Even if a home device is slightly off, tracking the exact same machine over six months shows you the direction your body is heading. As long as the measurements are consistently off by the same amount, I can still see trends and identify changes over time.

The convenience of having all this information at my fingertips means I can track trends without spending hours analysing data. I log into my PKB account monthly to review these numbers, but anyone can benefit from regularly checking in on their health.

The Benefits of Regular Monitoring

You do not have to be ill to monitor your health. Proactive health monitoring is about preventing problems before they start. When you check your numbers regularly, you start to understand what your normal looks like. You can then spot changes more easily, whether they are related to your heart rate, blood pressure, or body composition.

For instance, I notice that my heart rate increases slightly during times of high stress at work, even though I might not feel particularly stressed. That small piece of data encourages me to make simple lifestyle adjustments, such as incorporating relaxation techniques and ensuring I get enough sleep. Similarly, keeping an eye on my weight and muscle mass helps me make decisions about my exercise routine and diet.

Even if you do not have the latest health-tracking gadgets, you can still monitor your health manually. Keeping a regular log of your blood pressure or weight, and noting any changes, helps you detect patterns early. The act of paying attention to your body and tracking key health indicators can be a motivating factor in maintaining healthy habits.

Daily Rhythms over Dramatic Overhauls

Staying healthy does not mean spending your entire life in a gym. It is about small, repeatable habits that fit into a normal day.

I am trying to get into the habit of making everything a routine. Most of the information I see shows that raising your metabolic rate comes down to consistent, daily movement, like an hour of walking a day. So that is exactly what I do.

I walk the dog every morning. To make sure I do not drop my fitness goals, I use habit stacking. As soon as we finish walking the dog and I come back through the door, before I sit down to start work, I immediately do a set of press-ups.

Breaking exercise into smaller, frequent blocks throughout the week means I actually end up doing more total press-ups than if I tried to force one massive, exhausting workout session. If I do not do it in the morning, I know I am not going to do it in the afternoon.

Taking Charge for the Long Term

One of the greatest benefits of regularly tracking your health is the ability to take action before something becomes serious. Just like a car that gets regular maintenance, our bodies need consistent attention. Knowing your numbers gives you the tools to maintain your health before problems arise.

I view health tracking as a long-term investment. It is not something I obsess over daily, but I take a little time each month to review my numbers, compare trends, and see if anything stands out. This habit helps me feel more in control of my health, knowing I am doing everything I can to stay well for the long term.

By keeping track of these key health indicators, you are better prepared to make small changes that lead to big improvements. Whether that is adjusting your workout routine, managing stress better, or tweaking your diet, knowing your numbers makes a massive difference.

Tracking your health numbers is a proactive way to maintain wellness, not just something to do when you are unwell. By monitoring metrics like heart rate, blood pressure, and body composition regularly, you give yourself the best chance to catch early signs of change and make informed decisions. It is a simple habit that has a big impact.

Whether you use smart devices or manually enter your data, the key is to stay consistent. Take a few minutes each month to review your numbers and trends. By doing this, you are able to spot potential issues before they become problems, empowering you to stay on top of your health. If you do not have an account yet, it is free and you can register to get started straight away.

The post May Measurement Month: Why automated tracking wins (From an inherently lazy perspective) appeared first on Patients Know Best Blog.

At Patients Know Best (PKB), we’ve always operated under a simple premise: if you ask patients to trust you with their health data, you must prove you are worthy of that trust.

I’m sure there are many people around that remember the difficulties of storing and accessing paper based medical records, no definitive audit trail of data access, entire paper records getting lost or misplaced, and most of all, significant barriers for patients to access their own data. 

With the shift to digital health records came the birth of the immutable audit trail – an unalterable log of every clinical interaction.  This evolution enabled real-time data sharing, granted patients direct access to their own records, and ultimately improved clinical outcomes.  In the early days of on-premise digital records I remember scare stories of un-encrypted backups being left by an open window and going missing or USB drives being lost/found with patient data on. These new risks translated quickly into a need to ensure secure access, storage and transport of patient records, everything from simple tasks like password/encryption management to a world with ever increasing cyber threats needed to be monitored, managed and mitigated.  

Technology has significantly improved efficiency but with providers now responsible for managing data security, availability, and confidentiality in the cloud, focussed security is needed to maintain trust and an ability to demonstrate to customers that all the processes are in place throughout day-to-day operations.  This is where SOC2 comes into play.

In an era where data is both a patient’s greatest asset and a target for cyber threats, security is obviously a constant priority. We recently certified for SOC 2  (System and Organization Controls) as a prerequisite for international expansion into new markets like Canada.  We believe that utilising its rigorous framework not only demonstrates our commitment to security and privacy, but helps us remain vigilant as we continue to scale.   

The difference between a snapshot and a constant

You can certify for SOC 2 in two ways:

• Type I – which assesses the design of controls at a specific point in time, offering a quick snapshot. 
• Type II – which independently audits the operational effectiveness of these controls over a period, typically 3-12 months, providing deeper, ongoing assurance. 

It was clear that Type II was the only way to truly demonstrate that our security isn’t just a policy but integral to our operating system and culture.

Type II subjects every facet of the organisation to rigorous testing – from the lifecycle of employee access (starters, movers and leavers), change management protocols to encryption standards and incident response – ensuring that security controls are not just theoretical policies, but consistently applied habits. By verifying that these safeguards function effectively in practice for months at a time, the audit provides partners and customers with audited evidence across nearly 300 individual tests.

Global benchmark for trust

In the Healthcare sector we cannot be complacent about security, as custodians of highly sensitive Protected Health Information (PHI) we must be constantly monitoring and adapting to the escalating landscape of cyber threats.  SOC 2, as an international benchmark, provides a common language that all our partners and customers globally can immediately recognize as a hallmark of operational excellence.

Today, PKB has over 6.6 million registered users. Our platform handles billions of data, providing a borderless health record that follows the patient wherever they go. Maintaining SOC 2 Type II ensures that whether you are a provider in the UK, a patient in Germany, or a setting up a single patient record system in Nigeria, your data is governed by the highest tier of operational excellence.

Strengthening the healthcare supply chain

Cyber resilience across the Health and Care supply chain has never been more urgent. Healthcare providers are rightly concerned about Third-Party Risk Management (TPRM), they need to know that their partners aren’t the weak link in their security chain.  By maintaining SOC 2 compliance, we take that burden off our partners providing audited evidence that customers across the world can use to satisfy their own risk assessments. 

Security as a standard, not a project

The SOC 2 Type II accreditation is not a one-time goal, but a continuous cycle of accountability. As we continue to expand our global footprint, this framework helps us evolve our security posture evolves as  inevitably the threats we face change. By choosing the most rigorous path to compliance, we provide our partners and customers with more than just a platform, we provide that assurance that we are committed to transforming healthcare safely.

The post Scaling Safely: Why SOC 2 Type II is the Choice for Global Health appeared first on Patients Know Best Blog.

My role in communications is helping explain what we do: the benefits of giving patients access to, and the ability to share, their health data.

For a long time this was something I understood professionally. In June 2025 it became personal.

From 10,000 steps to a hospital bed

My aunt, then aged 93, fell and broke her hip. She was admitted to Chelsea and Westminster. I am her next of kin in the UK; her son, my cousin, is a GP living in Australia. He is someone I would describe as a bit of a technophobe (or used to be).

What followed was the start of a long and difficult journey. Until then, my aunt had been fiercely independent walking 10,000 steps a day, going to the theatre, living life fully. With one small trip at a friend’s lunch, that all changed overnight.

Weeks in hospital followed, then rehabilitation and a return home. Social care support was insufficient. Just four days later, she suffered another fall and another broken hip. This time, the surgery carried a 50/50 chance of survival and an equally uncertain chance of her ever walking again.

When professional became personal

In the middle of all of this, PKB stopped being theoretical for me. 

Chelsea and Westminster had been releasing data to her PKB account on our platform for years. That meant my aunt’s clinical information – every blood test, appointment, discharge or clinical update letter, and medication – was all there in one place.

Suddenly, a capability I had barely thought about personally before became invaluable. My aunt had given her permission to share her record with both her son and myself.

So when my aunt was admitted to A&E for the second time, I did not find out through the hospital. My cousin, on the Sunshine Coast in Australia, received a notification from her record about the admission. He called me immediately. I was by her side within the hour. Instead of being alone in A&E, she had family there. That mattered.

Information is a form of care

Over the months that followed, having access to her record made a real difference. 

When paramedics were called to her home, I could show them her medications instantly. I could pull up her blood results. I could explain her medical history clearly and confidently. There were moments where that information helped professionals make decisions, sometimes avoiding another hospital admission.

When applying for financial and social care support, every detail we needed was readily available. We had the admissions, timelines, clinical history, and medications. It reduced stress. It saved time. It brought clarity when things felt anything but clear.

Back in the dark

Ultimately, my aunt moved into a nursing home in a different region. The care she receives is excellent, but the digital experience is very different. That continuous, joined up view of her record is no longer there.

My cousin, thousands of miles away, has gone from receiving real time updates to feeling largely in the dark. He relies on me. I rely on one off phone messages, paper letters and updates from the home. Information has become fragmented again, transactional rather than connected. It is a stark reminder of what is possible and what is still missing.

The invisible army of next of kin

There is a growing number of frail, elderly people in this country being supported by a combination of healthcare professionals and family members, often at a distance.

One hospital doctor described being constantly interrupted by worried relatives asking for updates. It is entirely understandable. They want to help, to stay informed, to feel in control of a situation that is often frightening and confusing.

We were no different. We asked questions too. I am very aware that the volume of those questions, and the pressure on staff, would have been far greater if we had not had access to my aunt’s record.

My one piece of advice? Do not wait

I work for PKB, so I do not pretend to come to this without bias, but I also now come to it with lived experience. There is a simple feature that allows patients to share their records with whoever they choose.

Before this past year, I understood its purpose. Now, I understand its value. 

For those of us caring for elderly relatives, often from a distance and while balancing work and our own families, my advice is to ask them to use that button and share with you before they are sick or incapable. You never know when you might need it.

P.S. After reviewing this for accuracy, my aunt (now 94) reiterated that while her presence of mind is fully intact, she has zero desire to check her own record. She would much rather read a good book. She is, however, a fierce advocate for her current region to release its data so her support network can advocate on her behalf. I know better than to argue with her.

The post Give your support network the information they need appeared first on Patients Know Best Blog.

At Patients Know Best (PKB), the path to product leadership isn’t found in a computer science textbook – it was forged in the real world of clinical rigour and patient advocacy.

In this blog, we hear from two PKB leaders who traded their more traditional healthcare routes for tech. They share how the precision of music theory, the high-stakes environment of pharmacy, and the frustrations of fragmented NHS admin provided a helpful blueprint for building national-scale digital infrastructure. 

From being the first to integrate with the IM1 and the NHS App to navigating the “sad paths” of user experience, their stories highlight why frontline experience can be a powerful tool in shaping product development.

Reflections on my path to Product Leadership

Joanne Crean, Head of Product, Patients Know Best

If you had asked a younger version of me what I wanted to be when I grew up, ‘Product Team Lead in Healthtech’ wouldn’t have been on the radar. At that time, I was a keen musician, inspired by my father, a science teacher and musician.

Looking back, the path from those early passions, through pharmacy, to leadership at Patients Know Best (PKB) wasn’t a climb up a traditional career ladder. It was about following a thread of rigour, an interest in systems, and a bit of a gut feeling.

The orchestra of product management

How has an early interest in music influenced my work? In an orchestra, you practice your part in isolation, which can feel repetitive. However, when the group comes together, the result is where it matters. I carry that into my work today. I don’t mind the repetitive tasks if the outcome is significant. Breaking a large idea into its component parts and ensuring they work together is just conducting by another name.

Ten years in at PKB, my role has shifted to overseeing the company product roadmap. The company now operates across numerous NHS Trusts, national programmes, and international markets. It’s about planning how each part influences the next and ensuring the sequence actually works for the person using it.

Lessons from the pharmacy

I chose pharmacy as a career., following in my grandfather’s footsteps, It was a profession I respected, and it was also where I first saw the impact of a disjointed healthcare system.

As a pharmacist, I spent a lot of time verifying information, calling doctors to clarify prescriptions or trying to piece together a patient’s medical history to check for drug interactions. I saw firsthand how fragmented information was a safety risk.

Pharmacy drills into you that there is no room for error. You learn the importance of good system design, preventing mistakes before they ever reach the patient. In healthtech, we have to apply that same clinical rigour. If the design is poor, the consequences are real.

Trusting my instincts

After finishing a PhD, I was keen to try something new while I figured out my next steps. I landed an internship in the European Commission in Brussels, focusing on eHealth. This was a time of rapid personal and professional development. It was there I re-encountered PKB, having first heard of them while volunteering for Ashoka. I was once again struck by their mission and decided to reach out,  joining them as a Project Manager. While I had initially expected to stay for a year or two, I’m still here ten years later! During this time my passion for this area has only grown, and the work continues to be deeply engaging and rewarding.

Moving to national systems

My decade at PKB has involved moving from managing individual projects to leading integrations with national government infrastructures.

A major milestone was our work with the IM1 API to provide patients with their GP data. Seeing this come through was rewarding because it opened new ways to support patient care.

The integration with the NHS App was another big one. Previously, registration was only possible via invite. Integrating with the NHS app -and being the first to do so – was a significant move. It required us to rethink how users access records, shifting to NHS login.That transition led to a significant increase in usage. Data that had been sitting idle was finally accessible to the people who needed it most: the patients.

Advice: Look for the good

Healthtech is a long game. It is highly regulated, often slow, and the systems are under immense pressure. Unlike consumer tech, you don’t see results overnight.

My advice to those entering this space, especially aspiring leaders ,is something I learned from our founder, Mohammad: Stay optimistic. It is easy to default to complaining about resources or the pace of change. But to lead, you have to look for what’s good in the work, no matter how small.

If you find an area that interests you, follow it. Don’t worry too much about what looks sensible on a CV. When you follow your curiosity, you might just find yourself ten years into a job you thought you’d only stay at for one.

How the User Journey Became My Motivation

Ruth Whichelow, UX Lead, Patients Know Best

In 2010, I took my first role in healthcare, working for an NHS service that was aimed at improving access to health services. At the time, I didn’t realise that the frustrations of that role would become the catalyst for a career in product design. My impetus didn’t come from a love of technical specifications; it came from seeing the holes in the system and wanting to champion the person on the other side of the screen.

From manual workarounds to digital solutions

Initially, I worked in a triage service where we reviewed GP referral letters to determine the most appropriate care pathway for each patient. They were almost always insufficient – usually just three lines of text from a doctor, with no accompanying blood tests or medical history. We would spend our days manually copying data from one system to another, trying to follow pathways that felt fundamentally broken.

Later, working for a similar service that focused on care planning, our nurses were tasked to signpost patients to appropriate support & services, much of which involved handing out stacks of paper leaflets and care plans. I watched as patients—some of whom were at risk of slipping through the cracks—inevitably lost that paperwork before they even got home. I kept thinking: “If only there were a place to record this electronically and share it.”

When I joined PKB, I started in the Success Team, deploying the platform on the ground to services similar to those I had been managing, replacing the paper leaflets and plans with PKB. I quickly realised that the ‘look and feel’ of a system determines whether a clinician actually uses it or a patient actually understands it. I helped start PKB’s Product team because I wanted to solve the problems I had witnessed firsthand.

Scale through the National Front Door

Building at a national scale has been an incredible way to bridge those gaps for more people. In 2019, when I started leading our integration with NHS login and the NHS App, it wasn’t the ‘national front door’ it is today. Back then, it was a quiet project, and few realised it would eventually become the backbone of the government’s 10-year health strategy.

We were the first Personal Health Record (PHR) to integrate with NHS login in late 2019. At the time, it was a massive milestone because it effectively removed the ‘gatekeeper.’ Clinicians no longer had to manually verify a patient’s identity; for the first time, patients had the power to verify themselves.

When COVID-19 hit, that early work became vital. As usage of the NHS App surged, we were already in place to offer patients immediate, secure access to their records—from test results to care plans. Since then, I’ve led our involvement in NHS England’s Wayfinder Service as part of the first cohort of Personal Engagement Portals (PEPs) to implement the national programme.

It’s been exciting to see this initiative go live across the majority of our Trusts. Most recently, I’ve been leading the charge as PKB became the first to adapt these screens for Mental Health Trusts over the past year, ensuring the same seamless experience is available to all patients.

Putting the ‘real world’ into UX

My role as UX/UI Lead is to ensure the experience always makes sense from the user’s perspective. I have a strong creative drive — I care about the look, the feel, and the user’s journey — which I think stems from my first love, literature. While the back-end architecture is complex and vital, I’m focused on the narrative: how the story unfolds for the user, whether it flows coherently, and whether every element serves a clear purpose. If something feels out of place, confusing, or self-indulgent, I want to edit it out. For me, it’s about ensuring the final experience reads clearly, naturally, and truthfully.

When a developer or a clinician wants a specific feature, I’m the one who says: “In the real world, a patient will be confused by this,” or “A clinician doesn’t have time for that extra click.” We focus heavily on the “sad paths”—the moments where the user doesn’t follow the planned journey—to make sure the system is truly intuitive when people are stressed or in a rush.

Scaling through shared learning

Working with NHS England on this for the long haul has been a genuine exercise in sector-wide collaboration. While their teams and consultants naturally change over a multi-year project, the depth of their user research is invaluable. They have the capacity to perform deep community outreach—talking to patients in community centres where English isn’t a first language—and they share those outcomes with us.

It’s a two-way street; we share our own user research, and they share theirs. This exchange has been highly productive, allowing us to swap practicalities and learnings not just with the centre, but with other suppliers and our respective customers. This level of collaboration supports and encourages innovation in a very practical space, making sure technology isn’t just ‘available,’ but truly accessible to everyone.

Speak up: Your experience is your power

For a long time, I felt like an imposter because I didn’t see myself as a “tech person.” But having worked inside a healthcare provider’s office and witnessed the pain points first-hand, I realised that I bring genuine expertise to the problem we’re solving.

Understanding the real-world challenges — how systems fail, where processes break down, and how it feels for staff and patients — is just as valuable as technical knowledge. That perspective matters.

Your frontline experience is your power. Use every opportunity to get exposure to different teams, learn the why behind the what, and never stop advocating for the person on the other side of the screen.

The post From Frontline to HealthTech appeared first on Patients Know Best Blog.

I joined PKB because I believed in the mission to unite these fragmented records and put the patient at the centre. I saw the astonishing dysfunctionality of a system where a patient – even in a global hub of medical excellence like Cambridge – has to physically carry paper files between world-class hospitals just to share their own history. Mohammad’s mission became my own: to ensure this vision succeeds. For me, this isn’t just a job; it’s a vocation. It is, quite simply, the culmination of my life’s work.

In 2021, however, an accident transformed this professional mission into a personal one.

The Day Everything Went Black

In November 2021, I was driving through Cambridge at a modest 20mph when my world began to spin. My vision blurred into a kaleidoscopic double image. Before I could bring the car to a halt, everything went black. I woke up to a sea of green; I had driven straight into a bus that was heading in the other direction.

I was lucky. If I hadn’t hit that bus, I would have swerved onto the pavement, likely hitting pedestrians or cyclists. By a stroke of fortune, I crashed right outside Addenbrooke’s Hospital. Within minutes, I was being treated for Atrial Fibrillation (AF). My resting heart rate was 146 bpm; my heart’s electrical circuits were misfiring completely.

Bridging the Gap with Patient-Contributed Data

During the 11 months it took to stabilise my condition through cardiac ablations at Papworth Hospital, I realised that the ‘missing piece’ of the medical record isn’t just what the clinician writes inside their institution – it’s what happens in real time when the patient is at home, work or even on holiday.

My colleagues at PKB had bought me an Apple Watch, and it quickly became an essential monitoring tool. While waiting for surgery, I could monitor my heart in real-time. If my heart rate plummeted or I felt ectopic beats while sitting on the sofa, I could capture an ECG immediately.

The impact was eye-opening:

• Clinical Insight: My surgeon at Papworth specifically requested these ECGs. They provided a window into my heart’s behavior that hospital monitors – which only see you for a few minutes during a consultation – simply couldn’t capture.
• Self-Management: It brought me in tune with my own body. By measuring my vital signs, I could manage them. I learned to adjust my activity levels and even my sleep patterns based on what the data was telling me.
• The Power of Prevention: Most importantly, I saw the preventative potential. If I had owned that watch before my accident, I might have spotted the warning signs. Today, I use it to continuously check my stats, ensuring I never go into a similar crisis uninformed again.

Beyond the Silos

My experience highlighted a frustrating reality. Even though I was being treated by two hospitals situated literally next door to each other, the only way to move my records from one to the other was on paper. Furthermore, getting my watch data to my surgeon required manual emails; it wasn’t yet the structured, integrated data flow that we’ve built at PKB.

This is why I am more committed than ever to our mission. We aren’t just trying to move data between institutions; we are integrating the patient’s own data into the clinical record. Whether it’s monitoring AF to prevent an accident or managing sleep to improve general wellbeing, the data we generate ourselves is a vital part of the story.

When the patient is empowered with their own data, healthcare doesn’t just react to crises—it prevents them.

The post From Co-Founder to Patient: Why Patient-Contributed Data is a Missing Piece of the Puzzle appeared first on Patients Know Best Blog.

For anyone who knows me, you’ll know that a brew isn’t just a drink. It’s central to any meeting you’ll have with me, normally in a ridiculously oversized mug, working through problems, planning exciting new directions for the business, day to day catch-ups, and those human moments that make the workday meaningful. Important things are very often over a cuppa.

Six million registered patients!

It’s a milestone that gives us a real sense of pride at PKB. Before we start pushing even harder for the next million, I’m using my most favourite time of the year as a good excuse to pause and reflect first. 

The bigger mission

My role at PKB is commercial. It’s about ensuring we are a stable, sustainable organisation – creating value for our customers, supporting efficiency across the health system, and growing responsibly so we can continue to serve for the long term.

But what motivates me, and what brought me to PKB in the first place, is something deeper.

PKB is a social enterprise with a mission dedicated to patients. Our leadership is guided by a strong ethical and moral compass. At the core of what we do is a simple principle: everyone deserves access to their own health information – not as a privilege, but as a right.

When people have their information, they know and understand their care better. They make more informed decisions. They feel empowered rather than left waiting for answers. That sense of control can completely transform their experience of the healthcare system.

So giving six million people access to their health record isn’t just a statistic. It’s six million individuals who now have something that is the gift of knowledge.

Partnering with the workforce

It’s also, I hope, a gift to our customers across the NHS and growing network of independent organisations. We are all focused on giving patients meaningful information that allows them to collaborate with their clinicians.

In my view, we’re not selling them a product or a solution. We’re selling them the ability to utilise the biggest contributing factor to the health workforce: the patient. They are the people who look after themselves day in, day out. We’re helping them to be an active partner in their care.

None of this happens by magic.

Our teams work hard behind the scenes solving problems, finding better ways of doing things, and keeping everything moving. It isn’t always easy, but their determination is what turns our mission into a lived reality for millions.

So as we approach Christmas, I want to thank them – and to thank our customers, partners, and every patient who has chosen to use PKB.

Most importantly, I want to wish everyone a happy Christmas and good health.

It’s the gift we all hope for, and the one that matters most.

The post 6 Million Reasons to Celebrate this Christmas appeared first on Patients Know Best Blog.

What is changing? 

We are transitioning our NHS App notifications to the NHS App’s updated and improved workflow.

In January, PKB will trigger an NHS App message for activity in Events & Messages. Our existing native in-app notification will also change to the NHS App’s newer, improved method. This is for :

• New documents 
• New Advanced Questionnaires
• New messages from healthcare professionals

The new NHS App message means patients will receive a permanent, easily locatable message in their NHS App inbox with a link back to the corresponding activity in PKB.  This ensures important information is not missed and provides consistency across other messages flowing into the patients’ NHS App.

The NHS App message and new in-app notification will work anywhere in England, not just in the 20 ICSs that have enabled PKB’s personal health record screens. This national infrastructure should increase engagement from patients outside of the ICS of PKB’s customers.

Maximising engagement

All NHS organisations in England using PKB will get this improvement, unless they request otherwise. It extends the functionality, giving patients equitable access across regions, and does not require the region to enable the PKB / NHS App integration. 

We will continue to use email/SMS as a fallback channel if the notification fails or if the patient does not read the message in the NHS App message within four hours. This follows other notification services in the NHS App, such as NHS Notify. 

A single inbox experience in the NHS App

To further simplify navigation, the ‘Events & Messages’ jump-off point in the NHS App will move into the main NHS App Messages inbox. This fits PKB into other communications the patient gets in the NHS App. It adds PKB’s advanced messaging features into the NHS App Messages inbox, such as large attachments – pictures and videos – and multi-directional communication – between patient, clinical teams and family members.

You can read more about the PKB & NHS App integrations, as well as NHS App Notifications & Messages in our manual. 

The post Enhancing patient communication via the NHS App appeared first on Patients Know Best Blog.

New feature: Carer API 

Organisations can now pull a list of carers for a given patient from the new $carers FHIR custom operation. 

The new custom operation allows organisations to easily check, from their EPR, whether a given patient has carers and, if so, who they are. This makes it easier for clinicians to make decisions around safeguarding for children who come into their care. After making the necessary safeguarding checks, they can accelerate the registration and access of parents. 

Organisations will call the custom operation with a patient’s NHS number and will get back a FHIR bundle of Consent and Patient resources. For each carer, the bundle will contain one FHIR Consent resource, which contains the privacy labels that the carer has access to, and one FHIR Patient resource, which contains the carer’s name and contact information. 

Other Child Safety and Child Health Features

Freeze record 

Clinical teams use the freeze record feature to protect patients who are unable to manage their own records, such as those experiencing a crisis, or to investigate potential safeguarding concerns. Team professionals can restrict access to a patient’s record for the patient and their carers by clicking ‘Freeze record’ when viewing a patient’s record.  When a record is frozen, patients can no longer log in and carers will not be able to view the patient’s PKB record. When the patient attempts to log in or the carer tries to access the record, they are shown a message stating that the record is unavailable. 

The ‘Freeze record’ button, as seen by a team professional

Automatic Carer Removal 

Carers are automatically removed from paediatric patients’ records at key milestones as they grow up, unless a professional in their team overrides this removal. Carers are automatically removed from a patient’s record on their 13th, 16th and 18th birthday. This approach aligns with the EU General Data Protection Regulations 2018 (GDPR) and the UK Data Protection Act 2018 (the DPA 2018), which state that children and young adults can assume control over their personal information and restrict access to it from the age of 13.

PKB sends an email to patients and their carers one month before each of these milestones, letting them know that the carer will be removed unless they take action. To prevent the removal, the carer or patient should get in touch with the clinical team. 

You can read more about automatic carer removal in our manual and in this previous blog post. 

A team professional preventing the removal of a carer for a patient approaching their 13th birthday 

Enforcing Carer Access

Team professionals can also prevent patients and other carers from removing or changing the access granted to specific carers. If a patient or carer attempts to remove or change a carer’s access after a professional has ticked ‘Patients & carers cannot edit sharing’, they are shown an error message. 

This feature is useful in scenarios where specific individuals need to retain access to a patient’s record, for example, when the child’s parents are separated or has a difficult home situation. 

A professional preventing a carer from being removed from a patient’s record

Growth Charts 

PKB automatically generates and displays growth charts for patients under 18 years old. Height and weight measurements in these patients’ records are plotted on World Health Organisation growth charts, allowing the child’s healthcare team and carers to track the child’s development against the WHO Child Growth Standards and identify issues. 

A child’s height plotted on the WHO growth chart for boys

A child’s weight plotted on the WHO growth chart for boys

You can read more about WHO growth charts in PKB in our manual. 

Restricted Registration Paths 

When a child is too young to have an email address or manage their own health record, their clinical team should set up a PKB record without an email address. The clinical team can add carers with different levels of privacy access, allowing the carer to see data in the child’s record that matches the privacy access they have. The carer can also act as the child’s proxy by adding data to the record and communicating with the child’s healthcare team. 

When the child turns 16, they can register for PKB using their NHS login. This will add their email address to the record and allow them to control it. Carers will still have access to the record if the clinical team has retained their access or if the patient adds them back. 

Registration using NHS login and registration tokens is not available for patients under 16. If a clinical team thinks a child is mature enough to manage their own record before they turn 16, they can manually send them an invitation to register.

The post New Carer API adds to PKB’s support for children’s health appeared first on Patients Know Best Blog.

What did you get out of your internship at PKB?

Being an intern at PKB has allowed me to build my research skills beyond academia, working with everything from scientific papers to government policy reviews. I’ve also met some brilliant (and lovely!) people who were very willing to share their journey in digital health. I enjoyed contributing to a real project and learning firsthand about the future of digital health. 

What did you learn about the digital health landscape?

I’ve learnt that healthcare and health tech are constantly evolving. Not only are they evolving, but the policies and frameworks around them are changing, which can impact how health tech will look in the future. I discovered how differently countries manage their systems, and that one of the biggest challenges in digital health is getting systems, providers, and patients to share information seamlessly. Even the best technology won’t work if patients and providers aren’t comfortable using it. 

  Tell us about your research for the book.  What surprised you?

I was surprised to see that countries that are now starting to incorporate digital healthcare from scratch can sometimes move faster than those with decades of legacy infrastructure that has to be accounted for. I also found it fascinating that nations with similar economic profiles can vary greatly in their systems. Sometimes a system that thrives in one place might struggle in another due to differences in policy, setup or public attitudes. 

 What skills have you gained from this research?

I’ve honed my ability to synthesise large amounts of information and distill it into clear, accessible points for a broad audience. These skills will help me in the future with research, as well as in any role where clarity and accuracy are essential.

How would you describe the company culture at PKB compared to the other places you have worked?

PKB’s culture is incredibly supportive and, despite it being a virtual company, highly engaging. I enjoyed the trust placed in people to own their work and manage their time, as it was a refreshing change from the rigid deadlines of university. Even as an intern, I was given the chance to present my research and share what I found most interesting, which I really appreciated. 

How  do you think someone else could benefit from being an intern?

It’s a friendly way to ease into the digital health space, with a low-pressure environment to quickly get up to speed on the terminology. It also has a good mix of research and writing, letting you apply skills from school or university in a meaningful way.

What advice would you give a future intern?

Don’t be afraid to ask questions; the people here are very generous with their time and knowledge. Share your ideas too; even if they are not used right away, they can spark new directions and improvements. 

How would you describe what PKB does to a friend?

Patients Know Best, at its very core is a company that wants to give patients control over their own health records. The person most invested in your health is you, so it makes sense to be able to access all your information. 

What value do you think PKB brings to healthcare?

PKB helps clinicians make better, faster and more informed decisions by giving them access to previous tests, imaging and consultations. At the same time, it empowers patients by putting more information directly in their hands, helping break down barriers and prove the healthcare system as a whole. 

How did your experience at PKB differ from your expectations?

I was pleasantly surprised by the autonomy I was given. I was encouraged to take ownership of my project and contribute ideas. I also appreciated how much my colleagues cared about my getting value from the internship, not just completing research.

The post My Summer as a PKB Intern: Researching the Global PHR Landscape appeared first on Patients Know Best Blog.

Over the last year, we have continued to improve our advanced questionnaires feature. This blog post provides an update on changes we’ve made and those still to come. 

Released

Answers from questionnaires saved as FHIR Observation resources

Answers collected in advanced questionnaires are now saved as discrete data points in the patient’s record. PKB can configure specific questions or calculated fields to be extracted to FHIR Observation resources when building a questionnaire template. For example, every time a patient completes a GAD-7 questionnaire, the GAD-7 score can be saved as a FHIR Observation in the patient’s record. In this example, the generated Observation resource contains a reference to the patient, a reference to the QuestionnaireResponse it came from, the GAD-7 score, and the SNOMED code representing the GAD-7 score. 

Organisations can retrieve these Observation resources from PKB using our FHIR API, allowing them to, for example, track a patient’s GAD-7 scores over time, without having to handle the rest of the questions in the questionnaire.

In the future, we will display these discrete data points in the patient’s record. For example, GAD-7 scores generated from GAD-7 questionnaires will be saved in a patient’s Measurements section, allowing patients and professionals to track how the score changes over time from the PKB UI.

Professionals and patients can optionally edit completed questionnaires 

When sending questionnaires to patients via the PKB user interface (UI), professionals can optionally allow patients and other professionals to edit the answers. If a patient edits their answers, the professional who sent the questionnaire gets an email notification to let them know, and the questionnaire displays as ‘Amended’ in the UI. The professional can allow one of the following options:

• The patient can edit completed answers.
• Professionals can edit completed answers
• Both the patient and professionals can edit completed answers

This feature is useful when a questionnaire includes questions that the professional needs to answer, for example, when they are taking measurements in a clinic.

It is not always appropriate or useful to amend questionnaire answers after the patient has submitted them. By default, questionnaire answers will not be editable by anybody after the patient has submitted them unless the Professional chooses to allow editing.

Organisations can also allow patients or professionals to amend completed questionnaires that are sent via the API. Example API calls can be found on the dev wiki.

Professionals get an email notification when a patient responds to a questionnaire they sent

When a patient completes or amends a questionnaire that a professional sent to them, the professional now gets an email notification to let them know. This ensures that clinical teams know when patients have answered the questionnaires that they have sent.

Coming soon (Q3 and Q4 2025)

Patients can start advanced questionnaires via the UI

Later this year, patients will be able to start advanced questionnaires from the PKB UI.  After this is released, patients will no longer be able to initiate simple questionnaires themselves.  Patients will be able to start questionnaires by clicking the ‘Start consultation’ button, which will only be visible to patients in teams using advanced questionnaires. 

After selecting one of the listed questionnaires, the patient will choose a professional from the team to send it to. If the team has team-based messaging enabled, the patient will not need to select a professional. Once completed, the selected professional (or the entire team, in the case of team-based messaging) will see the questionnaire in their inbox.

Clinical teams will still be able to send simple questionnaires to patients via the API or the UI if they have not yet moved to advanced questionnaires. Therefore, only workflows that rely on the patient starting the questionnaire will have to move to advanced questionnaires alongside this release.

If your organisation has clinical teams that rely on patients initiating questionnaires via the UI, please get in touch with your Customer Success PM.

Teams can choose whether their questionnaires can be started by patients

Clinical teams will be able to choose whether patients can start the questionnaires that they use. PKB will configure this when the questionnaire is added to the team. When the questionnaire is visible to patients, the patient will see it when they click ‘Start consultation’. If the questionnaire is not made visible to patients, the patient will not see the questionnaire when they click ‘Start consultation’. This allows teams to use questionnaires that they do not want their patients to be able to initiate themselves.

Advanced questionnaires CSV export: Table view

Professionals and coordinators will be able to export patients’ answers to a questionnaire in ‘table format’ (one row per patient) as a CSV, instead of the current ‘one row per answer’ format.

On the Questionnaires page, professionals and coordinators will see a list of questionnaires that their patients have responded to. They can choose to export the answers with the patients’ national identifiers, organisation identifiers, both sets of identifiers, or no identifiers.

The exported file will have one row per patient, with the questions appearing as columns. Where the questionnaire contains a calculated score, the file will have columns for the score and a description of the formula. This ensures that the person reading the answers on the CSV can check that scores have been calculated correctly.

Carers can complete questionnaires on behalf of patients

Carers will be able to complete questionnaires that have been sent to patients they care for. When a clinical team sends a questionnaire to a patient via the API or UI, the patient’s carers will also get an email notification allowing them to answer the questions. The carer is recorded as the author of the answers on the QuestionnaireResponse resource and it is clear in the UI that the questionnaire was completed by a carer.

Coming later

Professionals and coordinators can send a questionnaire to every patient in a team

Professionals and coordinators will be able to send a questionnaire to every patient in their team by clicking ‘Send questionnaire’ from the Questionnaires page. After clicking ‘Send questionnaire’, the professional or coordinator will select the questionnaire that they would like to send. They will then see a page that tells them how many patients the questionnaire will be sent to, and they will have to confirm they want to send it.

This extra step will help prevent users from accidentally sending questionnaires to more patients than they expected.

The post Advanced Questionnaires Development Update appeared first on Patients Know Best Blog.