Patients are often in the dark when it comes to their health data. Where do the results of our medical exams and scans go? What about the notes from appointments we attend with different medical staff? We know this information goes somewhere, but more often than not, we have no way of accessing it – and no real clue as to where it is held. In this article, we talk to Sophia Vignard, Projects and Innovation Manager at CARA, an association that offers online services for the secure exchange of health information. Sophia tells us about how CARA’s electronic patient record and newly launched Shared Care Plan can help to empower patients.

What’s an electronic patient record?

You can think of the electronic patient record, or EPR, as a repository that holds all the documents about your health. A typical patient will have appointments with many different healthcare professionals. Let’s take a fictitious patient called Carmen, who is pregnant and has diabetes. She might see her doctor for routine check-ups, her midwife for pregnancy appointments, a sonographer for scans, an endocrinologist to manage her diabetes and a physiotherapist to improve her physical health.

Where does all this information about her health sit? Often, it’s dispersed across various healthcare segments – and Carmen can’t access it. The point of the EPR is to group these documents so the patient can access and share them if she wishes.

Talk us through the advantages of having an EPR – is it just about easy access?

It does makes life easier: it offers all the information we need about our health at our fingertips. It also means we can avoid doing the same medical exam multiple times – which often happens if we see different doctors, because they don’t have access to previous results or aren’t aware we’ve done an exam already. But for that to be possible, the IT systems of healthcare providers must be integrated with our tools. We hope that in the long term, the use of these tools will contribute to reducing healthcare costs.

But perhaps the biggest advantage of the EPR is that patients become the owners of their own data. This means they have the information they need to be involved in making decisions about their health. We’re seeing a shift from healthcare professionals having the data and making decisions, to patients being much more involved.

It also gives patients greater control over how their data is used. Healthcare professionals don’t automatically have access to data held on the EPR. The patient chooses whether to give them access.

Does CARA involve patients in the development process when creating new tools? 

We’re trying to empower patients by creating tools that will encourage interprofessional collaboration between patients, their representatives and caregivers, and healthcare professionals. So, for instance, we created a new tool called the Shared Care Plan.

For this, we consulted patients, caregivers and medical staff about how to exchange information dynamically – because we wanted this tool to be about more than simply sharing documents. We wanted it to help patients and their doctors make decisions together. Coming back to our patient Carmen with diabetes, this means that instead of each healthcare professional making decisions in a silo, they can interact through the platform. Together they can find the best approach, define care objectives, share information and observations, and ensure the best outcome for Carmen.

So, we asked patients and experts – during a thorough three-day workshop – what functionalities they’d need from a tool for this to happen. Patients were involved in the process from start to finish – from conceptualisation to IT development.

We also have patient ambassadors involved in how we communicate about and promote our tools. As the core users of these products, they are the best-placed people to promote products and tell other patients about them.

How will these tools change the relationship between patients and healthcare professionals?

Since the patient in this model becomes the data owner and a potential decision-maker – rather than passively accepting decisions made by others – medical professionals will have to be much more aware of how they share information. The information they put in the Shared Care Plan, for instance, will be read by the patient. They’ll need to present this information accurately, but also in a way that’s clear and easy to understand.

Last year we spoke to Rodolphe Eurin, CEO of Hôpital de La Tour, about value-based healthcare systems – an approach that focuses on patient outcomes and relies heavily on patient feedback and input. Do you think this is where we’re headed?

Absolutely. People today want to be in control of their health – and in our digital age, there is no reason why they shouldn’t have their health data at their fingertips. There’s also no reason why they should be left out of conversations about their health. As we start to shift in this direction, patient feedback will be crucial to improve the services offered by hospitals or clinics.

How do you think the EPR will evolve from here?

There are a few barriers to overcome to make the EPR more widely adopted. One is that it needs to be integrated with different systems in hospitals and doctors’ offices. So, there’s a technical challenge in achieving this, along with legal constraints regarding security that need to be overcome. Of course, we need to be extremely careful about how we handle healthcare data, which is extremely sensitive and valuable. So data protection needs to be our top priority.

But I do believe it will evolve and, with new services like the Shared Care Plan, become much more widespread. It will also be integrated with other tools and platforms we use. For instance, we know patients would like it to be connected to wearables like smartwatches or glucose monitoring devices. This would give healthcare providers a much more detailed picture of their patients’ health. And for patients, it would mean access to a wealth of information that could help them detect a disease much earlier