00:00:00
Voice Off: Cent Jours pour Réussir (One Hundred Days to Success) is the G_NIUS podcast. Voix Off: Cent Jours pour Réussir is the podcast of G_NIUS, the Guichet National de l'Innovation et des Usages en e-Santé. Around Lionel Reichardt, meet e-health innovators and key experts to help you succeed in your projects.

00:00:21
Lionel Reichardt: Hello everyone and welcome to the One Hundred Days to Success podcast. In this episode we'll be talking about the co-design and co-creation of a healthcare device. Co-design with patients and users, but also with all stakeholders, whether public authorities, healthcare professionals, manufacturers or startups. To this end, we welcome Willy Allègre, engineer in the electronics laboratory at the Centre Mutualiste de Kerpape. The Centre Mutualiste de Kerpape is a residential and care establishment specializing in the rehabilitation of disabled people. It is located in Ploemeur, Morbihan. We also welcome Stéphane Giganon, National Director of Quality and Evaluation at AIDES, an association that works to prevent and support people affected by HIV and viral hepatitis. Willy Allègre, hello, could you tell us a little about your background?

00:01:16
Willy Allègre: Yes, so, I followed a university career at the University of Southern Brittany, we'll say until I obtained a PhD in applied computer science in the field of home automation for the disabled. Today, I'm an engineer specializing in technological assistance, and I'm part of the center with two overall missions: multi-disciplinary care with therapists and doctors, to propose technological solutions for patients; and I'm also involved in research, development and innovation projects, in particular with academic and corporate partners.

00:01:51
Lionel Reichardt: How does one go from doctoral researcher to Fabmanager in a rehabilitation center? What exactly do you do at the Centre Mutualiste de Kerpape?

00:01:59
Willy Allègre: In fact, for my personal story, I caught the virus, we'll say when I went as an intern to the Kerpape Center in the department where I work today. This led me to apply for an applied doctorate in home automation and disability. Today's Fabmanager is the fruit of the development of two projects in response to the needs of two colleagues, but also of the center's patients. What we do at Kerpape, perhaps to introduce the center, is one of the major rehabilitation centers in France. It's a follow-up care and rehabilitation facility which is part of the Mutualité Française Finistère Morbihan, a member of the VYV group. To give you an idea, we welcome four hundred patients a day, covering the fields of re-education, rehabilitation and socio-professional reintegration. Perhaps on the subject of innovation, it's often said that innovation is part of Kerpape's DNA. In any case, one of the highlights was the creation of the electronics laboratory in 1981, which is the department in which I work, and which is still original in France. In other words, Kerpape is uniquely positioned to have engineers working within the establishment, both to provide care and to develop new solutions based on needs in the field. More recently, an endowment fund has been created to support innovation initiatives, and an innovation-research department has also been set up. There are some sixty projects underway at our center. Then, more recently, we're in charge of an innovation center to be set up in 2021, called CoWork'HIT, under the impetus of the center, but also of Lorient Agglomération, Biotech Santé Bretagne and as part of a project called Handicap Innovation Territoire, which I'll certainly have the opportunity to develop in this podcast.

00:03:59
Lionel Reichardt: You work in the field of disability, helping patients with their rehabilitation and re-education work. When did you develop your co-construction approach? Was it easy to set up?

00:04:11
Willy Allègre: The co-construction, co-design approach is already, I think, inherent to the field of re-education and rehabilitation, meaning that the patient's project is co-designed by definition. There's a lot of listening and, ultimately, a posture of accompanying patients in their life project. Then, as regards innovation, there are different philosophies applied at the center. Perhaps the first is to focus developments on the user-centered design approach for the development of products, solutions, then called health or I'll say, in our field, more disability aids. This philosophy, if I have to sum it up, is that the user must be present and a contributor at every stage of the design process. From the definition of uses to the evaluation of the solution. I can give you a concrete example of a project funded by the Agence Nationale de Recherche (French National Research Agency) that we carried out three years ago, involving the development of a motorized standing mobility aid for people with hemiplegia, i.e. poor motor skills in one arm and one leg on one side of the body. The consortium of partners was made up of companies, researchers and clinicians. We could have said we had all the skills needed to develop this new device. That would obviously have been a big mistake. By involving people, future users, people with hemiplegia, right from the start of the project, notably through focus groups led by psychosocial researchers, we were able to target more precisely the essential activities to be covered by this device, in what situations it will be used in the future, and also to guide the technical choices regarding the ergonomics of the system, including the joystick in concrete terms. Users were also involved in the real-life evaluation, and I think that's really important. We were able to use the center's springboard apartments, which have been awarded the Living Lab Santé Autonomie label, to assess users' ability to carry out activities of daily living in real-life situations, such as getting up in the morning, cooking, in real-life experimental conditions. Perhaps the second point I'd like to mention is that, in addition to focusing development on the user and involving him at every stage, we really need to encourage his participation at the highest level. We talk about patient-experts, patient-resources. We talk about empowerment in healthcare. We could draw on the recent recommendations of the HAS, which date back to September 22nd. I quote: "For each project or quotation, the aim is to achieve the highest possible level of commitment. However, it is important to adjust and adapt to the contexts and possibilities of both the people concerned and the professionals". In the field of disability, these words have an even greater resonance than in the field of broad health, when they enable people with diminished capacities to increase their ability to act. Nicolas Huchet, for his part, talks about Handicapowerment in this context, which is a term I really like, or how to transform these limitations into motivation? So, finally, he talks about his very personal opportunity to work on the development of his own hand prosthesis with a 3D printer, accompanied by a Rennes-based fablab. We're right in the middle of the Do It Yourself movement. Nicolas' example was a great inspiration for us, as we developed the Rehab-Lab concept, which is a manufacturing laboratory integrated into a health or medical-social facility, enabling patients who so wish to take part in the creation of their own technical aids using 3D printing. To achieve this, they are accompanied by an occupational therapist and a technical advisor, and in practical terms, they have the opportunity to create their own objects using computer-aided design software, and to take the process all the way to the end, where they are considered project managers. To illustrate the project, the Rehab-Lab concept, when we talk about technical aids, we're talking about small, everyday objects that help compensate for a disability. I can give you two examples. First, Tristan, a young wheelchair soccer player. For those of you who don't know, this is indoor soccer with a bigger ball and players in electric wheelchairs. For the record, Tristan is a member of France's world champion team, which recently beat the United States. In three one-hour sessions, Tristan modeled what's known as a fork, which replaces the wheelchair's classic joystick and enables him not to use fine finger movements to control his standard joystick, but rather to use global hand movements to move around the wheelchair. Tristan was able to work on the ergonomics of this technique, but he was also able to choose the materials, the color and then personalize it with the star and its number. I could also mention a lady over 70 who recently came to Rehab-Lab, who I found incredible. In a one-hour occupational therapy session, mouse in hand and accompanied by a technician, she was able to model a customized card holder so she could continue to play with her friends without having to hold them in her hand. In fact, she was no longer able to do so after all. Behind these two examples, around the Rehab-Lab, there's a strong stake in the self-esteem of having made her own technical aid, and also, by extension, in the development of digital skills that can be put to good use once she's out of the establishment, and also in the progress we're seeing in the field, in the acceptance of her own disability in the end. Perhaps to conclude on this project, these examples of user involvement at the highest level have multiplied. We've been able to develop what we call a Rehab-Lab community. There are sixteen structures in France today that have been awarded the label, and there are around ten other structures in other European countries that we are currently supporting.

00:10:54
Lionel Reichardt: As you mentioned, you work with many different interlocutors, patients and their entourage, healthcare professionals, therapists, occupational therapists, manufacturers, startups and also territorial institutions. Is there a secret to getting them to work together and federate their energy?

00:11:10
Willy Allègre: Yes, so there's no secret, maybe I have a few things in terms of feedback to give. First of all, to be able to put them around the table to enable sectors to be decompartmentalized a little, to talk about common subjects with different points of view. Then, the second point is perhaps to find the right people with this open-minded attitude and people capable of fostering collective intelligence to reach consensus, sometimes, because the issues at stake are different for the different structures. Ultimately, it's about putting the future beneficiaries of the solutions or programs that are going to be developed at the heart of the discussions, and in a way, what we've been able to see in the working groups set up as part of this project is that, yes, there is the expression of needs that come to the table, crossed views to propose solutions and always this desire to really put the user need at the heart of the discussions in the end, which ultimately enables us to go a little beyond the issues specific to each of the structures.

00:12:26
Lionel Reichardt: How do you evaluate this co-construction approach? What legal framework do you have on the takeover? What industrial responsibility? What legal liability? Is it easy to find your way around?

00:12:36
Willy Allègre: No, to be honest, it's quite complex, it depends a lot on the field of intervention where we're going to develop innovations. If we're talking about the clinical field, for example, clinical evaluations, we can enter into conditions linked to RIPH, Recherches Impliquant la Personne Humaine, with the filing of CPP, Comité de Protection des Personnes, and so on. Depending on the project, we may have to deal with fairly standard data processing and CNIL declarations. Sometimes, and in the field of disability, the boundary is still a little blurred as to what is health data requiring HDS hosting, for example, and what is not in the field of disability in the broadest sense? I'd say that for the assessment side, it's the same thing. It's really a question of tailoring the solution to suit the needs of the client, whether it's a technical solution or a more global program with indicators for a given territory, as in the case of the last project I mentioned. It's really not easy to make sense of it all. I think that the objective for innovation players is to identify expert relays according to their fields of innovation, so as to be able to draw on these experts and border on conditions for evaluation and experimentation. This is really important.

00:14:08
Lionel Reichardt: To conclude Willy Allègres, what advice would you give to a project leader, to someone who would like to launch into co-design and co-construction in healthcare?

00:14:17
Willy Allègre: So, I'll have three pieces of advice to give, maybe it sums up my previous talks a bit, but it's to think about how to involve users at the highest level and involve them in all stages of design to really talk about co-design. It's also about respecting the conditions of involvement I've just mentioned. The second piece of advice would be to clearly identify the players to be mobilized and to question the overall ecosystem, all those who revolve around the life course of users or people with disabilities, with the difficulty of breaking down the barriers between healthcare players. This is inherent to the French healthcare system, and we need to identify existing networks that are representative of certain players, such as networks of rehabilitation centers and medico-social structures. Incidentally, there's a new structuring of innovative medico-social structures, supported by the ANS, called three-point-zero structures, which will be able in the future, for example, to host experiments and carry out evaluations of e-health solutions in France, so this is typically a network to identify if you're developing innovations in this field. Then, the third piece of advice would be to identify - especially to save time and energy - expert centers to support you, precisely to cover all the essential aspects in the field of disability, i.e. the regulatory, legal and technical aspects, as well as those related to financing, which is essential in the French healthcare system. On this last point, in the field of disability, finding a single point of contact to provide support for these various aspects is a bit of an obstacle course in France today. This is why, two years ago now, as part of the Handicap Innovation Territoire project, we launched CoWork'HIT, an innovation center that will be operational in January 2021, and which intends to be part of the ecosystem of three-point-zero structures supported by the ANS that I just mentioned.

00:16:28
Lionel Reichardt: Willy Allègre, thank you for your testimonial and your insight into the work done at Centre Mutualiste de Kerpape. You're asking more specific questions about community action and co-design approaches in the healthcare field, elements of an answer with Stéphane Giganon, national quality and evaluation director at AIDES. AIDES is an association founded in 1984 that works to prevent and support people affected by HIV and viral hepatitis. Stéphane Giganon, you've been working for over twenty years on co-creation projects with communities. Can you tell us about your philosophy and the key principles required for the success of your projects?

00:17:11
Stéphane Giganon: I think the first thing that comes to mind is that co-constructing is above all, I think, a process, a practice and then a dynamic of sharing, what I've learned and what I know about it. It's obviously based on my experience in the field and the training courses I've taken during my career. The idea is to provide a response to an emerging need, and to do it with the people concerned. For me, when we build a project, a tool or a program, it has to be designed with people, not just for people. The person must be at the center, which means that throughout the project, from reflection and creation to evaluation and even use, we put the person at the center, but to do this, we need to give him or her the means to act, by which I mean to act and decide. It's not just a matter of developing practices that include people's voices, i.e. a kind of alibi form of participation in which someone is asked for an opinion at a given moment, but it's a matter of questioning in depth the modalities of participation and the social role of each person, the role we can each play in this project construction. This means that, in order to co-construct with a group of individuals, everyone needs to be prepared, because we need to be capable of confronting others, and in order to confront others, we need to confront ourselves. What is our knowledge? What are our practices and how do we interact with others? The way we act professionally. There are three stages that seem essential to me. The first is getting to know the population. The first step in building with is to get to know the population you want to work with. You have to get close to them. You have to reach out. You have to look for people, in their everyday environment, just about anywhere. But to do that, before approaching the population and reaching out to them, you have to work on your own representations, i.e. what do we think of this population we're going to reach out to, which we may not know, but we need to work on our representations. Once we've done this work of getting to know the population, the second thing is to identify the resources of that group, stimulate them and mobilize the resources of the group that needs to get involved with us. We must systematically recognize that each individual has skills, and that these skills can be shared. Skills can be complementary, specific, whatever, but in a group, we have to recognize that for each individual. That was the second step, and then obviously, the third, in order to achieve all this, is to create the conditions in which relationships within a group are possible and can be genuinely shared, where we can genuinely share our knowledge and powers. This presupposes specific practices and postures within a framework that is as reassuring as possible. These conditions mean creating spaces of trust, so that people want to work together; it means having benevolent, non-judgmental attitudes; it means guaranteeing confidentiality, for example, to enable exchanges and mutual learning. People really need to feel safe to talk, express themselves and give their point of view. Secondly, we need to develop egalitarian and horizontal relationships. There are no experts, or more accurately, we're all experts in something, or we're all laymen in something too. We need to give everyone the time to express their expertise and bring it to life, to discuss and give people the time to take their place, but for the people in the group to take their place, the professionals need to take the time to make room. It's this balance that's going to work, and if there's a facilitator in the group to help skills and abilities emerge, he or she must aim to develop each person's ability to act. This must be their main objective. People must be able to act, give their point of view, make choices for themselves and for the group. This brings us back to the notion of empowerment, i.e., in a group, how we go about developing each person's autonomy, each person's power to act, each person's power to say. This is what the facilitator must aim for if he really wants to get people to work together, because in fact, the ideal is to get people to work together to find solutions, including with professionals, i.e. everyone must be on the same level and collaborate, for all this to be taken into account and for us to really have a group that collaborates, works and learns from each other, the objectives obviously have to be clear and, above all, stated from the outset, i.e. the reassuring framework is obviously attitudes, but it's also about having clear, stated objectives, not making mistakes, knowing why we're there, what we're there to do, where we fit in, etc., etc., repeat this systematically.

00:22:49
Lionel Reichardt: Our episode is coming to an end. Thank you for listening to us. We thank our two guests for their availability, and you for listening. Feel free to subscribe to the podcast on the listening platforms. We look forward to seeing you soon for a new episode of Cent Jours pour Réussir.

00:23:07
Voiceover: Those who are making e-health today and tomorrow are on the G_NIUS podcast and all the solutions to succeed are on gnius.esante.gouv.fr.