Tomorrow’s hospitals : patients

Catherine Cerisey: I entered the healthcare environment when I became ill 19 years ago. I was diagnosed with breast cancer, then had a relapse: it all lasted 8 years. In 2009, the first blogs were emerging, and I started one of my own on breast cancer: it was one of the first and it worked really well: 2.5 million views and 1.4 million visitors. For an illness that affects 56,000 women [in France] per year, it really helped move things forward. At the time, journalists were interested in what cheeky bloggers had to say, so they looked me up. It was a time when things were becoming “patient-centric”, so I was asked to talk at “Patients Included” conferences. Putting patients everywhere gave a good impression… Then I was contacted by institutions like the HAS [Haute Autorité de Santé], where I was told “You’re not working with charities so we don’t know where to put you.” I started working with charities: I was vice-chair of Cancer Contribution, which works in the field of democracy in healthcare, and I’m the administrator of Europa Donna, the French branch of a European coalition that operates in 47 countries and which fights breast cancer. I became involved in institutional commissions, in particular the HAS, on patient information and shared decision-making. At the Health Ministry, I’m a member of a group working on santé.fr, the new public health information website.

A lot of things are done for patients without their involvement, whoever is in charge: institutions, charities, laboratories, foundations, or hospitals. There was no advice agency with patient experience, so I created my own in 2012. For the past three years I’ve also been working as a patient/teacher at the Bobigny faculty of medicine, where I teach GPs on hospital internships.

#hopitalduFutur: Is listening to what patients have to say a new thing?

CC: France is a long way behind. The first time people started talking about “Shared Decision-Making” was in 1972 in the USA! The words we use are both revealing and very important. Empowerment was translated as autonomisation, which ignores the notion of power; shared decision-making was translated décision médicale partagée, which creates terrible confusion because people think it’s a medical decision shared by healthcare professionals but not with the patient. In the charity sphere, the word “médical” has been removed and we use the term “processus de décision partagée“.

The “Kouchner law”, an act of parliament on patient rights, dates back to 2002: that’s 17 years ago. Where are we now? There still an attitude in French medicine that is really patronising. Patients are referred to in the third person: “my patient thinks, says, believes, etc”; but the patient can think for himself/herself and say “I think…etc”.

In our classes at the faculty of medicine, we can see how the doctor’s perspective has changed. The classes are run jointly with a doctor, based on problematic clinical cases presented by the interns. In this teaching, we asked the interns to analyse not only the purely medical data relating to each case, but also the social and psychological issues the patient has to cope with. In 95% of cases, we see that what causes problems is communication and a misunderstanding of rights in a healthcare framework. In French, to talk about caring for a patient we have the term “prise en charge”, which is problematic because “charge” implies a burden. In English we have care and cure… We really have a problem of semantics here, despite the fact that the French language has an extremely rich vocabulary.

#HopitalduFutur: Can this patronising attitude be explained by generational factors?

CC: The relationship doesn’t change, because doctors are given senior status when they complete their training, and they reproduce these poor practices… When they start out as interns, they still haven’t seen a patient as part of the learning process, and when they come out on the other side they are lost… I think older doctors, who have learned from their patients, have much more empathy than young doctors who think they know it all.

What you do is just as important as what you say. Body language is as important as words. Doctors are reluctant to be called caregivers, despite the fact that they provide care. Medicine is possibly the most hierarchical profession after the army! At the top you have the cardiologist and the neurosurgeon and the oncologist… and right at the bottom you have the GPs, nurses, nursing auxiliaries, porters, etc. At the end of the chain there’s the patient.

#HopitalduFutur: What impact do you think digital technology will have?

CC: Digital tech is a tool, but it’s not THE solution. It’s an extraordinary opportunity for doctors and patients alike. It helps doctors to focus on the core of their profession—caregiving—because it saves time. Some specialists are worried, radiologists for example, but I tell them: “On the contrary, you’ll reconnect with your core activity, because technology never replaces the human factor”. And clearly patients will benefit from technology and robotics: for example breast surgery no longer leaves scars—some extraordinary progress has been made!

This major transformation will be a positive thing if we all build things together: if we talk to the people who are going to use this technology and not just the doctors and patients. We have to broaden our perspective because there are now a whole range of new professions, logisticians, mathematicians, etc… If we co-construct alongside the people directly involved, we’ll do things that are better adapted to what people are used to, by getting a little closer to social design. Which is actually what you’re doing!

Are you familiar with the Canceradom platform? As part of my vice-presidency of Cancer Contribution, we responded to a call for projects organised by the health ministry and decided to propose a methodology with the help of a designer: a series of civic ideas based on surveys carried out in three regions: Auvergne Rhône-Alpes, Hauts-de-France and Ile-de-France. The subject was the shift to ambulatory care in oncology, which has been approached from a financial perspective and not in organisational terms. It showed, among other things, the predominant role played by carers, who, as part of this shift to ambulatory care, become psychologists, childcare assistants, nutritionists and nurses, standing in for what hospitals no longer provide… Their importance was very strongly emphasised. We drew inspiration from ideas that work in other sectors. For example, respite solutions for Alzheimer carers could easily be carried over into the field of oncology.

#HopitalduFutur: Although the focus is on the illness rather than the patient, the latter is still a stakeholder in terms of the care he or she receives. What changes have you seen in this regard?

CC: The rise of empowerment should be seen in parallel with the development of the Internet. In shared decision-making, the necessary precondition is information. With web 2.0 and social media, we have easy, rapid access to information. This can be a real problem for a physician. Let’s take an example: in a breast cancer case, reconstruction can be performed using several techniques. A surgeon seldom masters all of them; so he will offer those he is familiar with, which means there’s a bias. But there’s a lot of fakemed around, so people need to be trained. Doctors are still too reluctant: they tell people not to visit websites. Of course patients are going to visit websites. All you have to do is tell people which websites are reliable, by putting up notices in waiting rooms for example: santé.fr / HAS / patient associations, and so on.

Chronification is a factor in the development of empowerment, and before that the AIDS years played an essential role. (The Collectif Inter-associatif sur la Santé (CISS) was established in 1996). This created a surge for which the act of parliament of 2002 tried to provide a regulatory framework. This law has its limitations, but at least it exists, even if it’s not very well known and poorly applied. Patients don’t know their rights, doctors don’t know about patients’ rights, and nobody knows about users committees in hospitals.

Health scandals don’t always push things in the right direction. The problem is not so much fake news as media coverage. The way health is covered in the media is often sensationalist: they latch onto something and make it into a huge issue, without any sense of restraint. In medicine, we have to weigh up the benefits and risks, and that means making complex choices. This is what patient empowerment is all about: access to a wide range of information that is relatively reliable, despite a few errors: not many errors survive on line for very long.

Shared decision-making involves raising the level of information to which patients have access. Consent should be informed, and that means doctors have to adapt and avoid medical jargon. “Do you understand?” is not the right question! The right question is: “What have you understood?” so that the patient rephrases what he or she has understood. I’m told that this takes time, but it’s not a question of time, it’s about making a choice.

#HopitalduFutur: Patient communities are highly structured in the US, for instance “PatientsLikeMe”. Why hasn’t the idea taken off in France?

CC: “PatientsLikeMe” involves patients suffering from rare conditions that come together and share their data. In France, a private company first latched onto the idea and suggested applying it to all the commonest chronic conditions. It provides forums, invites charities, and sells the data! This has given rise to an uncontrolled business, but it’s come in for a lot of criticism from charities. So today we have platforms managed by charities (Moi patient, Seintinelles) that work directly with researchers. It’s a more coherent approach.

#Hopitaldufutur : When we leave hospital, we’re often still sick. How should follow-up care be managed?

CC: There are many follow-up care apps, but all are inadequate: to follow up on your therapy, you need support. I took part in making the film Ma vie sous ordonnance with ten patient associations, supported by Novartis, on cancer patients who don’t follow up on their therapy. We interviewed a GP, an oncologist, patients, a psychiatrist, and so on. We realised that it’s all a question of support. How you provide adequate support depends on the individual. The apps can work for a time, just like the electronic pill dispenser. There are now “intelligent” meds, for example there’s a drug with a built-in microchip for schizophrenics, can you imagine such a thing? Once again, think about the user!

#Hopitaldufutur: The architecture of a hospital reflects the way it’s organised. What would you like to see happen in the future?

CC: If we want to make the relationship between doctors and patients into a real partnership, I’d start by getting rid of desks with computers on them in consulting rooms, to break down that barrier. Arriving at hospital is often a horrible experience. It’s awful to see patients in a worse state than yours. Designing tomorrow’s hospitals begins in the car park. Look at Gustave Roussy Hospital for example, you can’t even park there! The same goes for Clinique Hartmann, which is 20 minutes from the nearest metro station! How can that be right, for people who are sick? A good car park has a lot of disabled spots, and of course it’s better for people to park near the ward they’re going to, but the layout can vary according to the way things are organised.

The image of hospitals has to change: we have to make them look less medical. When you’re on the Paris ring road, Gustave Roussy sticks out like a sore thumb: it just screams “cancer ward”, it’s very brutal. The surgical areas can look clinical, but the rest should have a friendlier urban face.

Mixed use is also an interesting concept, because people spend long periods in hospitals. I’d love to see libraries, video libraries and gardens.

Due to chronification and ambulatory care, waiting times are long and hospital stays are of varying duration. We should create friendly places where young patients can meet and mingle, with sofas, TVs, coffee machines, books and so on. Not only for the patients, but also for the carers. People bring their smartphones and iPads into hospitals: they should be able to charge and connect them.

It’s important to manage waiting times, providing proper places for people to take a breather such as gardens.  You could get a text message when it’s your turn, like customers do at IKEA. It would mean you didn’t have to wait in an uncomfortable room without moving. Being called up for your consultation frees you from anxiety. Having to wait in a room is like being held hostage.

Natural light is essential. The chemo rooms I used to go to had no windows, and you have to stay in there for four hours. Other things are also stressful: noisy swing doors for example!

And last but not least: signage. Large hospitals are like mazes, and that’s very stressful. The Mayo Clinic in the US has developed a geolocation app that’s really effective. At the Hôpital Saint-Louis in Paris, the signage is colourful in an attempt to make it more cheerful, but it’s not very convincing. At La Pitié Salpêtrière, the layout of the campus with its separate wards is not clear at all, and it’s very hard to find your way around.

#Hopitaldufutur: How can you introduce mixed use and make it possible for different groups to exist side by side? Should you have separate circuits for different illnesses?

CC: It’s really stressful to see patients who are sicker than you are. Does that mean serious illnesses should be hidden away? How can access be personalised? We should be able to keep standard reference points, but we need to adapt them. It’s a constant source of anxiety when you’re waiting for your results alongside people who are sicker than you. And then there’s the smell that stays in your mind: that’s traumatic too.

#Hopitaldufutur: Even if the way it’s perceived depends on the particular condition, the idea of serious illness is always present in hospitals. How can this be taken into account?

CC: There’s the seriousness of the place, and then there’s the question of dignity. You lose your body when you enter a healthcare setting. The glaring example is open-back gowns, for which there’s no justification! They’re the height of indignity. The confined spaces of ambulatory rooms are dreadful: you can’t have a friend or family member waiting in there with you. At Institut Curie, you go into an undressing room before you enter the ambulatory room. You take off your clothes and wait, and then suddenly a door opens and you find yourself partly naked facing the medical team. The same goes for X-rays. GPs have screens in their offices—it’s hugely important!

The important issue is hospital assessment. There are two systems [in France]: Isatis, run by the HAS [health authority] via a questionnaire sent to people who have been hospitalised in a given year. About 4% of patients actually respond, so it’s not very representative. Recently a user initiated the website Hospitalidée, which allows patients and web users to score healthcare facilities. This came in for a lot of criticism because people said patients would assess hospitals like hotels, focusing on food or other such details. But the aim of its creator was to provide feedback in order to help improve the quality and safety of healthcare, and to improve skills in healthcare facilities. The website is on line, but the reluctance is real. The British website NHS Quality is another interesting example.

#Hopitaldufutur: What about private facilities?

CC: Of course they have their “client-centric” approach, which is different, but they don’t want to be ranked either.

But the real choice for a patient is obviously that of quality of care, which means being able to choose the right doctor. How do we access information, and what are the criteria? It’s hard to get hold of patient feedback, it’s very opaque, and getting pointed in the direction of a specialist or facility mostly depends on what other doctors say, or word of mouth if you’re lucky: that can create bias

#Hopitaldufutur: Does assessment by PREMS (Patient-reported experience measures) and PROMS (Patient-reported outcome measures) open new perspectives?

CC: PREMS may be of interest if we involved users in constructing the assessments and criteria, to get genuine feedback on the quality of life, mobility and experience of patients in healthcare facilities. So it would really be a form of co-design.

Assessment raises the fundamental question of whether a patient is an empowered stakeholder or a client. If the patient is just a consumer or a client, the outcome will be the Uberisation of medicine and healthcare assessment! The patient has freedom of choice; there’s no reason why someone from outside the medical world shouldn’t be able to access information, which should be shared on the Web. The first step is to inform people that they can choose which hospital they go to, which is something not a lot of people are aware of. In Paris, the healthcare offering is very large and it’s possible to choose, whereas in the provinces it’s more complicated and there are regional inequalities. In France we have an extraordinary model that should be defended and maintained.