Madeleine Brady, inflammatory bowel disease (IBD) patient, Engagement Consultant and formerly a comms lead for Health Outcomes Observatory (H2O), presents a personal view on the impact of H2O on patients.

As patients, we are the experts on our own bodies. When we record what our bodies feel or experience, these records are known as Patient-Reported Outcomes or PROs. PROs could be one of the single most powerful factors in driving sustainability within the healthcare system.

If you have the usual features of a Smartphone, you probably already gather PROs. You could be doing this through even the simplest health app. These apps can be great to track your sleep, calorie intake, or how many stairs you might have climbed. Some of us even track specific conditions by filling in migraine apps, tracking menstrual cycles, or keeping an eye on our moods; all very typical examples of PROs. They are a great way to keep an eye on our own health, get a sense of changes over time, and prompt discussions with our healthcare providers. The problem is, the PROs we gather aren’t currently integrated into the healthcare system in a meaningful way.

Imagine what it would be like if our PROs could be anonymously aggregated with other people’s data, not just those on the same apps as us but patients like us across Europe, or even the world. The information that would be available to us would be vast. At the click of a button, we could see how we compared to others, whether our PROs were experienced by others as well, or even how well our treatment plan worked in comparison to others.

This kind of information can be incredibly empowering for us patients. We might see that our PRO isn’t ours alone, and with this knowledge, we go from being one voice to a vast chorus. But this data is also very intimate and extremely precious. It must be protected, both for the sake of the individual patient, but also for society. Only then can it truly contribute to advancing healthcare and nobody can use it for financial gain. As we say at the Health Outcomes Observatory (H2O), it should flow like water. How do we tap into this resource, gathering large amounts of data ethically, while still making it flow in a way which is useful?

H2O is a public-private consortium that brings together patients, providers, regulators, researchers and healthcare professionals committed to putting patients at the centre of all actions. H2O is creating a common language, resulting in improved patient outcomes, an increased flow of data, and more sustainable and efficient healthcare systems.

In H2O, we believe standardisation is the key. Once an outcome is standardised, it can be compared as part of larger data sets. Standardisation for PROs means finding the same terms of measurement for common patient-reported outcomes. At the moment, there are lots of different ways to gather similar PROs (e.g. uveitis and swelling and inflammation are all different words for describing a puffy eye). If clinicians and patients use the same PRO ‘language’ it becomes much easier to compare data across lots of patients.

This opens-up a new world of possibilities that will bring benefits for individual patients, as well as the broader population. If we can combine PRO data with clinical data, it’s a game changer for everyone. For me, it would boost my voice as an IBD patient. Having this information in my pocket would mean I could;

• Articulate concerns about my treatment (‘It’s not just me with this rash Doctor, there’s a bunch of us in Europe with the same thing’)

• Advocate for a care pathway review (‘I’m having more uncontrolled symptoms than other patients like me, what can we do differently?’)

• Hold my caregivers to account (‘this hospital is consistently getting poorer patient outcomes for people like me, please explain why?’)

• Be a part of something bigger by contributing to research that could help others (‘I’m not sure if it’s just me, but someone might want to know that I’ve had a difficult time with this treatment’)

Using a ‘common language’ also opens the flow of PRO data. Data is currently sitting in pockets (literally in the patient’s pocket on their phone) but also in other healthcare and governmental settings. Most often, healthcare professionals have been responsible for gathering and sharing this data, but this is just one of their many responsibilities. Although they play a vital role in helping interpret data, it’s not always reasonable to expect them to find ways to feed this data into multiple data sets.

It seems so obvious, so why hasn’t this been done before now? Many have tried, but frankly, it’s a huge undertaking, and it can only be done with trust and robust governance in place. This is where H2O is coming in to change the game. H2O has just been set up across multiple locations in Europe, which means that we can start to gather information across larger patient populations than ever before.

Make no mistake, H2O isn’t aiming to be the next hot healthcare app. It’s aiming to do so much more than that. We are building trustworthy channels which will give patients access to important health data while also giving them a chance to contribute to the advancement of science. At the same time, we are opening-up the flow of data across the whole healthcare system and delivering a positive impact across the healthcare ecosystem by:

• Allowing decision-makers to make better-informed health policy decisions,

• Enhancing health research prospects,

• Promoting the development of new treatments that reflect outcomes reported by patients,

• And by sustaining more efficient healthcare systems.

So, let’s seize the biggest resource we all have in our pockets to empower patients and healthcare systems all over the world.

About H2O

To learn more about H2O, visit www.health-outcomes-observatory.eu

H2O recently held an event to celebrate the launch of the H2O observatories in the Netherlands, Austria, and Spain, with Germany and Denmark to follow. The event showcased expert views and deep-dives into a variety of topics, including: the potential H2O holds for national healthcare systems and how it can be a catalyst for sustainable and value-based healthcare systems around the world and the pressing need for linked and standardised data. You can watch the event’s presentations and roundtables here.