The Clinical Centre NeMO (NeuroMuscular Omnicentre)

The Clinical Centre NeMO (NeuroMuscular Omnicentre), a highly specialised medical centre part of the public Italian healthcare system (Sistema Sanitario Nazionale). The center manages four clinical facilities distributed from the North to the South of the Italian territory, located in Milan (Lombardy Region), Rome (Lazio Region), Messina (Sicily Region) and Arenzano (Liguria Region). Nemo responds specifically to the needs of those affected by neuromuscular diseases, implementing a multidisciplinary approach that puts users’ needs at the center. Its main purpose is to improve the quality of life of patients, providing them and their families with clinical and psychological support. Its mission is to create a network for the diagnosis, cure, and care of neuromuscular diseases based on the excellence of medical services and the centrality of the patient’s needs. Its objectives are about preserving the autonomy of the patient as long as possible, preventing and/or slowing down the evolution of the disability, improving the general quality of life. In particular, the individual rehabilitation plan is managed by a multidisciplinary team (composed by neurologists, neuropsychiatrists, psychologists, pulmonologists, and physiatrists) that takes care of the patient and his/her family along all the stages of the disease. Another novelty is the “nurse coach” who helps the family in taking care of the patient once come back home and manages the relations between the caregivers and NeMO and other medical services. The Centre’s 4 medical facilities reach out to approximately 3,200 patients/year. Its operating model relies, amongst other principles, on provision of funds from associations whose members are people with neuromuscular diseases and their families. Its operating model relies, amongst other principles, on provision of funds from the associations of people with neuromuscular diseases. That, allied with the fact that its operations are carried out necessarily inside of facilities/hospitals owned by the National Healthcare System, allows Nemo to provide free services to its patients.

Stakeholders & Beneficiaries

NEMO exists to take care of patients with neuromuscular diseases and their families. They are frequently grouped in family associations. The team of doctors, specialists, nurses and the management are all devoted to putting the patients at the centre of the treatment / care. The city of Messina is talso an important community for Nemo in terms of local support, because the city is small, so the Centre is more representative within that context and all the community is involved in the project. When patients die, the family raise donations for the Centre, and all of the persons involved participating in all the stages, even in the death moment. Professionals also mention ASL – the local public healthcare institution, but maybe even more important are the suppliers/home care providers, that understand the functioning and the bureaucracy to which they are subject to and are flexible in efficiently providing Nemo with necessary supplies.

Co-creation process

Co-creation is taking place in all three phases: planning, structuring and service delivery. Not yet in the part when patients go home (domicile phase), as the Centre is not completely well structured for that yet. According to patients, value is created in both the design and the delivery of services, as Nemo works, in co-creation, co-production with them, on innovation, listening to their needs and treating them with dignity. The importance of the families’ integral participation in the process is highlighted in the professionals’ testimonial as well. All stakeholders also agree on the evaluation of services, as it allows the professionals to redesign and adapt their service, which do not exist separately, but it is a result of all phases in which the patient is present.

Results, Outcomes & Impacts

The patients and families are all very satisfied with the non-standardised, or individualised, care model applied in Nemo. They rate each professional they meet during their treatment on a scale from 1 to 7 as follows: nurse coach: 6,71; physiotherapist: 6,65; nurse: 6,76; speech therapist: 6,69; doctor: 6,75. According to page 21 of the CSS report, their perception of the treatment received from their arrival through their stay in Nemo’s facilities is as follows: possibility of accessing Nemo 24/7: 6,69; respect to their privacy: 6,67; their perception of being treated as a person, and not just as a patient: 6,60; respect and approach regarding their religious beliefs: 6,59; dedicated spaces to leisure time (recreation, tv, games): 6,56.

Challenges & Bottlenecks

In spite of the unarguable evidence collected in the different fieldwork approaches regarding value creation, the question of value destruction was also brought up by some of the involved parts. Nurse coach brought up the risk from the part of healthcare professionals of being too involved in their jobs and ultimately “loosing” their sense of personal life. Also, the “excess” of care can highlight a consequence of value destruction for the patients as they could expect too much care and forget that they have a brute, degenerative pathology that needs an active role from them too to be fought. Political relations must be carefully managed too, otherwise a wrong move can lead to value destruction, like in the nonprofit world, where egoism of its actors can sometimes lead to conflicts and disruption, or in the social media world, with the propagation of various news, which can generate conflicts and disruption in the value creation process. Finally, the risk of creating excessively high expectations and not delivering what patients expect, i.e. the cure, because it has not yet been found for neuromuscular diseases, also represents a big challenge.

Transferability & Replicability

The model of the nurse coach is already inspired from something that is well-known in the U.S. Model. Also, the methodologies is applied in four different clinical facilities throughout Italy. So, the clinical medical concept it not related to any very specific, local context and can be replicated or transferred.

Success Factors

Creating a symbiosis among all the stakeholders is what makes the individualised care system work: patients must be aware and feel confident towards the multidisciplinary team; healthcare professionals must carry certain types of value (respect, dignity, etc.) not only in their professional life but also in their personal one to be able to use them with the patients; family associations play a crucial supporting role (financially, emotionally, in research); the supplier/home care providers, that understand the functioning and the bureaucracy to which they are subject to and are flexible in efficiently providing Nemo with necessary supplies, are facilitators; the local health public institutions need to be involved as well; and the citizens and communities are key too. All stakeholders work hand in hand towards the same goal, i.e. allowing people with neuromuscular diseases to not only survive but actually live quality lives.

Lessons learned

Evaluations are critical to constantly improve the services and keep as close as possible to the patients’ needs. Through constant monitoring of how much they offer to every patient, they can improve the answers to treatment needs. Based on this principle, they have developed a system for evaluating the satisfaction of patients accessing the services, based on their perception of the care/operating model. In concrete, Nemo has developed a customer satisfaction survey which is the result of a multidisciplinary work, through which the professionals of Nemo have expressed their point of view on the issues to be evaluated. For the first time, topics such as the respect for the individual and his/her choices, the perception of being ‘at the center of care’, welcoming to the patient’s family nucleus, were studied. This system also allows for the healthcare professional to redesign their role based on the indicators that are measured not only by the patients, but also by the public healthcare system.

Bispebjerg-Nørrebro (BIN) Project

The research setting of the case study is the elderly care sector in the municipality of Copenhagen, Denmark. The municipality has been undergoing a paradigm shift towards an increased focus on what a good life contains to elderly citizens (Københavns Kommune 2015b). This is discursively constructed in the elderly care policy as a move from “passive to active” implying an increased focus on self-determination and participation of citizens (Københavns Kommune 2015a). An experiment with improving elderly care services were organized by the municipality over a three-year period in 2015-2017. The project was called “Quality of life for elderly people in non-profit housing areas” targeting loneliness amongst elderly people living in their own homes. The point of departure was three residential areas for elderly, but the focus in this case study is on one specific area, the sub-project Bispebjerg-Nørrebro (BIN). The project is an illustration of the interplay between “prolonged” activities (taken place in the residential area) and activities maintained by the same employees in the local Activity Centre (Activity Centre Bispebjerg). The main aim of the project is: to enhance life quality and lessen loneliness among residents by creation of residence-near activities, which promote the creation of network and friendships, that the residents themselves want to engage in and manage after project completion (Project description, 2015). The project activities ended in the beginning of 2018, but the findings of the project continues as spin offs at different levels in the municipality e.g. as a loneliness foundation and a new initiative at the Activity Centre focusing on how the elderly to a larger degree can use the city of Copenhagen.

Stakeholders & Beneficiaries

Policymakers define the strategy. Front-line employees implement the physical training and relationship building courses (in their own words, they “make an offer” to the benefiairies – the seniors) and senior participate in the activities. Sometimes, external actors are involved too, as with the Cycling Without Age, a voluntary programme initiated by one citizen (to take elderly citizens on bicycle trips in the city), where the municipality responded positively, by purchasing some bikes to scale up the initiative. Finally, private funds and private firms play a role in research projects in the municipality (via living labs activities), as well as in the development of welfare technology.

Co-creation process

Policymakers define the strategy for healthcare policy for the elderly. Based on this framework, the front-line employees of the Activity Centre design training sessions with the elderly who take part. After a long period of time, the elderly can take charge and interact with each other on their own.

Digital Transformation Process

The municipality further participates in several living lab activities, where welfare technology developed by private firms are tested by citizens.

Results, Outcomes & Impacts

The main success criteria of the project is that it is perceived as meaningful for the elderly and that the municipality ensures that the findings and the learning of the project are applied prospectively. The success of the Activity Centre is mainly measured by its occupancy rate and members receive a phone call on a yearly basis as part of a satisfaction survey. In both cases the Centre gets high scores, but there is a caveat: the evaluators do not visit the centre and don’t see how the activities and the daily life unfold. Also, the employees think there is a lack of focus on what they perceive to be main objective of their work; i.e. the measurement of parameters that can embrace relationship building, life quality, degree of loneliness, the excitement of the elderly in the daily activities, etc. They propose to measure the amount of readmissions among the elderly that use the centre, testing of functional ability and to use the start-up dialogue with the elderly and the subsequent evaluation dialogues (each year) to see if they have experienced a change in life perspective.

Challenges & Bottlenecks

1) There is a disconnect between the policymaking level and the operational level on value co-creation: when reacting to what the role of staff is in value creation, policymakers emphasize strongly both the need for political structures and for development work at the strategic level as a basis for public service staff in creating value, but, at the level of the projects, there is much more emphasis on the competencies, enthusiasm and the mood of the front-line staff in co-creating value in direct interaction with the elderly users. 2) Policymakers state that, at the strategic level, there is strong interest in user involvement. Yet the potential of user involvement is not realised in a systematic way in practice. There is a lot of rhetoric rather real user involvement. Whilst the municipality is making an effort to listen to the users, the impact of this approach is still weak. 3) Projects like this one are meant to become driven by the users/citizens over time. Citizens should create the value and take responsibility for it. But here, the elderly citizens do not see themselves as having a key role creating value for others. And it takes time for the front-line employees to build trust with the seniors (1.5 year, according to the log-books), so that, later on, they can slowly withdraw as main actors and let the elderly themselves be drivers – based on their new social relations.

Transferability & Replicability

The objective of the project is to foster the ability of the elderly to stay as long as possible in their own home and to be self-sufficient as long as possible thanks to a good mental and physical health – which are stimulated by physical training and relationship building. This very general objective is replicable in other municipalities.

Success Factors

1) To let the surrounding community (associations, evening schools) use the facilities of the Activity Centre, outside opening hours. 2) A condition for creating value to the elderly, is to work network-oriented in the municipality and to open up between the different institutions at an individual level. 3) Create platforms where it is possible as an individual to be something for the elderly – e.g. supported by digitalisation. 4) To counteract the practice of the public sector that classifies people and puts them into boxes (e.g. the box of an elderly that starts at 65+) more flexible housing areas for people across generations could be developed – also to support the changing family structures. 5) If there were resources to support the relationships outside of the Centre, improvements could be greater 6) Invite other Activity Centres and their events to our place or to do activities together with groups of elderly that have the same challenges/oppurtunities. 7) To increase the visibility of the Activity Centre – and to create opportunities for being or becoming e.g. a visitor. 8) To make sure the local environment is designed for the needs of the Centre’s participants (e.g. having a hairdresser, a grocery shop, a church, in the whereabouts).

Lessons learned

1) It seems as if the lingo of public services and value co-creation, as part of the policy terminology of the welfare state, is mainly mirrored at a tactical and strategic level, but less at the operational level. The danger is that policies might become detached from practice, which is why it seems pertinent to contextualize what is meant by value and to whom. Or to discuss whether the term value are analytically suitable if it becomes a straitjacket to understand the logic of public services from an employee perspective. 2) There is a change that has taken lace from a partial patronizing approach towards a more responsive approach to care. However, to provide care must still first of all correspond to professional standards, and then next be responsive to users’ expectations and experiences. It’s less advanced than in the MAIA approach, where the senior’s need are placed above the professional’s diagnostic. 3) There is a generational effect: the elderly of today come from a frugal generation. They do not expect the public sector to solve their problems and are therefore quite thankful for all initiatives they perceive to be beyond their rights as citizens e.g. medical care and hospitalisation. An offer such at the Activity Centre and being part of the BIN-project falls within these not-expected-categories.

The MAIA method (Method of action for the integration of healthcare and support services in the field of Autonomy)

The case study examines the MAIA method (Method of action for the integration of healthcare and support services in the field of Autonomy). It is an organisational model adapted to local specificities. The increase in life expectancy and the ageing of the population have led to the problem of old-age dependency. Gerontological answers exist, but in France, coordination between the healthcare, social and medico-social fields is not sufficiently articulated and remains hospital-centred. These institutional, organisational and clinical fragmentations have serious consequences for the health pathways of elderly people. They cause discontinuities in elderly care (healthcare, support, waiting list in specialised institutions [Ehpad]), as well as contradictory decisions between professionals. This poor coordination makes the health system more expensive (emergency hospitalisation, hospital re-admission). To manage these dysfunctions, researchers have proposed to public decision-makers to establish an integration strategy, according to the Quebec concept, by adapting it to the features of the French system, and specifically by maintaining the centralised health insurance system. The purpose is not to create new structures but to organise and enhance the clarity of the healthcare and support system by ensuring the articulation and coherence of existing resources in the healthcare, social and medico-social fields.

Stakeholders & Beneficiaries

MAIA aims to ensure the decision-making process (interaction, collaboration) between stakeholders at two levels: at a strategic level – in order to develop a collaborative and decision-making space between decisionmakers and funders of gerontological policies (ARS, departmental councils, and others); at a tactic level – in order to create a collaborative and decision-making space between the operators responsible for the healthcare and support services that help seniors to stay at home. For seniors in complex situations, an intensive and long-term follow-up (including during hospitalisation periods) is implemented by a case manager (a new professional skill). This professional is the direct contact with the senior, with the general practitioner, with the professionals working at the senior’s home, and becomes the referent of complex situations.

Co-creation process

At the institutional level, there is a top-down approach to co-creation, designed to better fit the realities of the territories: the Regional Health Agency selects, via a call for application, an infra-departmental institution (non-profit organisation) which can mobilise local actors. This non-profit will be in charge of implementing the MAIA pilot on its territory, by connecting the professionals in healthcare to fit the territorial reality. At the user level, the co-creation materialises through the dialogue between the senior (the user) and the case manager, who becomes the spokesperson for the user and translates the user’s needs and wishes to the healthcare professionals (sometimes against the advices of the health professionals).

Results, Outcomes & Impacts

In its interactions with the users and professionals, the care manager helps to improve the organisation of the care system by identifying any dysfunctions observed on the territory.

Challenges & Bottlenecks

According to Policy maker, MAIA activity reports are done by the MAIAs but require a thorough understanding. Starting to introduce indicators for measuring value creation raises problems relating to the instrumentalisation of such indicators. Ideally, a territorial roadmap used by all the operational actors would be interesting to develop, but given the fact that data would be analysed on a very small territorial scale and then structured at a regional and national level, it requires money and tools. This is not done today. Monitoring indicators have been developed and used during the implementation stage of the MAIA method (e.g. number of contacts a senior must have established to access to the right resource). Currently at the local level, the impact in terms of organisation is measured (participation rate of partners at the tactical table, or for the case management, the territory distribution of seniors being managed). It has been noted that the participants to the tactical tables are always the same volunteers, actors who encounter difficulties in their daily practice do not often wish to participate (as this could be viewed as failure) and general practitioners are rarely part of the table. According to the pilot at the local level, a tool has been evaluated, but there is no local evaluation of the value creation of the MAIA for the territory. It would be interesting to know for example the impact of MAIA on the reduction of hospitalisation in emergencies, the reduction of user orientation towards wrong services. The partners should be involved to create these indicators. For the case management, the value creation is evaluate via the decreasing needs of the senior that the case manager has to fulfill. The creation of value can be measured via satisfaction surveys but this is not a global value creation, that is, the medico-social system as a whole. Care Pathways Operational Committees are currently working on impact indicators (non-use of emergency, scheduled hospitalisation). The current problem is that the databases are currently partitioned between the medico-social, social and sanitary field, so there are difficulties to measure the impacts on a pathway of a user. Finally, MAIA is on a voluntary basis, so there is no incentive (legal, financial), for professionals who are solicitated to take part in brainstorming sessions and one can find always the same people involved.

Transferability & Replicability

This initiative is applicable to the various sub-territories of the French regions, because of its very locally-oriented – and even user-oriented approach. The concept is therefore replicable to other territories. Also, the MAIA project was already copied from a similar initiative in Quebec, Canada.

Success Factors

An integrated, one-stop service provides, at any place of the territory, a harmonised answer adapted to the needs of the users, by directing them towards the adequate resource. It integrates all the reception and orientation counters of the territory. The MAIA method includes the development of common information-sharing tools and action-steering tools (a shared multi-dimensional analysis form, a standardised multidimensional needs assessment tool, and individualised service plan). If the MAIA method is originally top-down, once the project holder chosen by the network, the deployment is left to the initiative of the Maia pilot. Thus, this method is deployed on territories in very different even innovative ways, depending on the diversity of actors and networks already existing on the territory. Thus, the approach is considered as “help-it happen” by the policymakers. Various forms of MAIA multi-stakeholder networks have emerged at a territorial level.

Lessons learned

All respondents have stressed that it is difficult to determine the moment of value creation. National and regional public manager, partners, pilots agree on the fact that the creation of value of the MAIA method is mostly upstream, as a back-office function, during the constitution of the network, when the pilot and the partners discuss together to facilitate the articulation between services (creation of a professional dynamic). The users here are the partners. Thus, the value creation takes place before the services are delivered. However, the respondents point at that the value creation is also continuous, throughout the accompaniment of seniors all over the care process (according to the national and regional public manager and partners). When a single patient joins the healthcare system, this is value creation. According to the case manager, the value is created once the professional chain around the senior is stable and complete. Thus, mostly once the service is delivered, even if the senior monitoring continues to be provided.