How best to mobilise people and communities to improve health and wellbeing

One of my predecessors was known for ending every memo he wrote with the phrase “the patient is at the heart of what we do”. That was 20 years ago.

Twenty years later, suffice to say, the patient still isn’t really at the heart of what we do. If anything, the phrase has just become such a cliché that it’s no longer worth the paper it’s written on.

At the same time, we must bear in mind that Paris’s public hospital system, the APHP (Assistance publique – Hôpitaux de Paris), employs almost 100,000 people, including over 20,000 doctors, and is subject to financial, organisational, social and technological constraints. The challenges of addressing the dynamics of power inherent in such a system are complex.

So how can we move things forward? Firstly, we must be clear that the hospital community is not limited to the professionals within it, but has a far wider reach which encompasses patients and volunteers. And we must have a system in place which makes them useful, so useful that we cannot ignore them or - and this is essentially the same thing - accept that their role is a solely passive one.

But it’s clear that this is no longer just an ethical or noble aim; there is now a vital need to include these people in our health community.

Let’s take patients. The relationship between the hospital and its patients has fundamentally changed. Until recently, the relationship began when the patient was admitted to hospital and ended with their discharge letter. Nowadays, ‘time spent in care’ and ‘time spent in hospital’ are two very different things.

Many patients suffer from chronic illnesses which demand a lasting relationship with their hospital. At the same time, hospital stays are becoming shorter and shorter, with the arrival of outpatient surgery and day clinics. We’re not just interested in the patients’ tests and charts when they enter the hospital, but also in the data they have produced over the previous weeks, months and years.

In the past, the patient was something of a prisoner within the hospital walls, at the service of the hospital. Now patients have reclaimed their freedom; we must therefore bring them back, gain their trust and give them a reason to stay on our radar.

This means we must involve them more than we used to - the notion of ‘connected medicine’. Patients have always been involved in medical progress; there would be no medicines on the market if there weren’t patients and volunteers who agreed to participate in clinical trials. But in examples like this, they are very rarely co-creators. But when medical progress rests on digital applications and data collection, patients have an active role and are essential from the very beginning. At this point, we’re playing a different ball game. More widely, we must show that patient experience makes for change in hospitals.

I make use of this idea very often, for example using the letters we receive from patients. It’s thanks to letters from patients that we’ve changed the way we work in our A&E department. Previously, loved ones couldn’t pass through the door of the emergency room and patients were left alone in their cubicles. After receiving two letters, I showed how this set-up, which left patients waiting alone, could be dangerous. And now we have a new rule: the patient should never be left alone. We either authorise a family member or friend to wait with patients, or we get a volunteer to keep them company.

Following that change, we were able to develop a programme for bringing young volunteers into the hospital. In the past, hospitals had been reluctant to welcome these young people carrying out valuable citizen service; now, they are a part of the hospital landscape.

I was keen on the idea from the beginning, because I’d been involved in citizen service when I was in government. The programme encourages young people aged 16 to 25 to spend a period of between six months and a year contributing to civic life, with an allowance paid 90 per cent by the state.

Professionals and these young volunteers have perfectly complementary roles. The young volunteers aren’t under the same time pressures. Patients need some time away from health professionals. And they need people around them who aren’t subject to productivity demands. I often remind people that until the 19th century hospitals were run by many religious sisters and few doctors; today, it’s few religious sisters and many doctors. I see volunteers as the ‘new sisters’; they may not be religious, but, like them, they can offer their time and kindness. We now have a few hundred volunteers, and hope soon to have thousands. They help us look at our own practice, and it’s extremely important that we bring people into our community who can provide an external viewpoint, a candid gaze which allows us to improve more quickly.

Finally, in any hospital there will be patients who do need to stay for a long time, such as older people, children with rare illnesses and people with certain disabilities. We work to help them be both patients and volunteers, giving previously passive recipients an active role in the hospital environment.

APHP is a huge hospital group and its biggest enemy is inaction and conservatism. Patients and volunteers are now two of our biggest assets against our enemy, and they will only become stronger assets in the coming years.

Author

Martin Hirsch

Martin is the Director General, Assistance Publique Hopitaux de Paris