HUG partnership model

The increase in chronic diseases, health scandals and the mobilization of victims of the contaminated blood cases in the 1980s, as well as the development of patient associations, have contributed to the professional staff's growing awareness of the role and experience of patients.

For over 20 years, the World Health Organization (WHO) has promoted therapeutic patient education (TPE) and the active role of patients in their care (cf continuum of patient engagement in 1998). In 2013, WHO renewed its commitment to patient participation, empowerment and cooperation. In 2019, the Federal Office of Public Health similarly encouraged the involvement of partners in healthcare.

The benefits of such involvement are :

• individual : satisfaction with care received, reduced risks and shorter hospital stays
• collective : improvement of certain health indicators, reduced costs, increased efficiency of the healthcare system in general.

The recognition by healthcare staff of patients' experience has led to a cultural transformation in the care relationship, from the decline of the paternalistic model to a truly participatory relationship, a partnership. Partnership is defined as an active association of different stakeholders who, while maintaining their autonomy, agree to combine their efforts to achieve a common goal. In such a healthcare relationship, each partner becomes aware of their interdependent relationship with the other healthcare actors and is driven by the need to act in partnership with them. Such a collobarion mobilizes the complementary skills of all those involved.

This cultural transformation of the relationship targets the individual behavior of partners in care practices as well as in all relationships lived in the care environment. It induces significant change for all healthcare players be they patients or professional staff.

By committing to such an approach, patients and professional staff contribute to relational openness and improved communication. Ultimately, the implemented actions gain deeper meaning and humanity for both parties.

Since 2016, the HUG governance has positioned partnership as an institutional priority. This resulted in the launch of the Patient Partners project, part of the 2020 institutional strategy i.e. Vision 20/20. The aim was to develop the institutional culture of partnership at the HUG and ensure its implementation at every stage of patient care, in all care specialties, as well as at quality, teaching, research and organizational levels.

In 2017, the development of the HUG partnership approach was the first step towards co-construction between patients and healthcare professionals from several disciplines, driven by the concept of such collaboration. Based on the institution's partnership experiences, this approach served as a reference framework for the development of partnerships at HUG.

At the end of 2020, the results of the Patient Partners 20/20 project were very encouraging: collaboration between professionals, patients, family members and caregivers becomes natural for the quality of healthcare and services, and goes on to become so in teaching, research and organization. In 2021, the project became a fully-fledged program called Patients partenaires +3P (family caregivers, professionals and the public).

In parallel, the HUG partnership approach, drafted in 2017, was enriched by the data provided by the study of the caregiver/cared-for relationship. This was the project priority QSP4-11 (2017/2019), led with the support of the HUG Private Foundation and co-constructed with patients, relatives and caregivers and in interprofessionality. Five Diverse perspectives on partnership sessions, co-facilitated by a patient and a professional, each brought together 40 to 60 partners. The exchanges helped to identify factors favorable and unfavorable to partnership in relation to the following five healthcare issues: multidisciplinary care, therapeutic limitation, anticipation of care, shared decision-making and language difficulties.

The evolution of partnership at HUG and the data analysis results from the study of the caregiver/cared-for relationship, lead us to revise the initial HUG partnership approach.

The HUG partnership model (which incorporates the "patient engagement continuum" of the Montreal model) adapts to our culture, the different partners and the diversity of applications. It contributes to and supports the strong positioning of patient and family caregiver partners, as well as their recognition as health actors.

This model is the reference, a tool for partners and for the development of activities carried out in partnership. The HUG partnership model Patients partners +3P responds to- and guides this paradigm shift. It is the expression of a relationship of interdependence based on trust, listening, dialogue, mutual respect, shared decision-making and action. Everyone has their place and plays on the same team.

This evolution implies a redefinition of roles: the patient is an expert on his or her illness and lives it as their daily reality. The patient's evaluation of the hospital and its services is as that of a customer. He or she can only be cared for, or progress in partnership. As for the healthcare professionals, they come to understand that they are no longer the sole decision-makers. Instead, they seek to collaborate more, to co-decide and co-construct with the patient, and to establish a relationship of trust and transparency.

The partnership is therefore based on consideration for the other, on reciprocal recognition of each partner's skills, scientific and experiential knowledge. It is this very complementarity of expertise that enables the HUG to improve care and hospital stays.

In this collaborative context, patients are legitimized in their role of Health Actors, which most often takes the form of Actors of THEIR health, thus being partners in their own care.

Patients can also intervene at another level by collaborating with the healthcare system (HUG, healthcare academic establishments, University of Geneva, etc.) and be an Actor within healthcare in general. Patients and their caregivers take ownership of knowledge about their disease and choose to share it with other patients (mentoring, testimonials at associative or medical conferences, etc.). In other contexts, they are led to share their experiences for the benefit of professional staff (role-playing with medical students, colleagues in care teams, etc.) or even to join governing bodies to give their input.

The patient

The patient is the privileged partner in the care relationship, from the moment he or she arrives at the hospital, and after discharge. This partnership is exercised at every moment: whether it involves consultations or hospitalizations, follow-up of chronic illnesses or acute care.

The patient is also the professional's partner in activities related to teaching, research, quality of care and services, as well as organizational matters. The partnership implemented is specific to each of these areas. The patient partner is also a resource for other patients with a similar illness or care pathway. The patient's experiential knowledge combines with the professional's scientific expertise to convey comprehensive information to the patient.

The caregiver

The caregiver, the close caregiver, the companion, the third party carer or the therapeutic representative are often amongst the patient's loved ones. They provide emotional and social supportnand can also contribute to the patient's care and quality improvement within the hospital. Only the therapeutic representative can represent the patient in the event of the latter's mental incapacity. Curators and guardians are included in this category.

He or she is identified by the patient during hospitalization. The position of the partner caregiver in this relationship is equivalent to that of the patient.

Sharing the experience of one's illness

Patients and caregivers who are partners in the PP+3P program share their experiential knowledge of the disease, of treatments, of living with the disease. This expertise enables them to develop an authentic partnership with professional staff, to discuss and even question certain practices.

Patients and their caregivers work with professionals to find appropriate solutions to issues concerning their health and their care plan, or to questions of health strategy. There are pre-conditions for this participation, accessible, quality information for patients and a psychological and physical environment conducive to the expression of their experience, needs and expectations.

In other areas, the caregiver has the same role as the patient partner. Patients and caregivers can be involved in health policies, and even in the drafting and revision of public health legislation. These individuals demonstrate a sense of civic commitment and mobilize around health-related issues.

The mental health peer practitioner: benefits from certifying training covering the key elements of supportive relationships (active listening, ethical principles of accompaniment, etc...) and receives supervision from qualified healthcare professionals.

The peer practitioner has first-hand experiece of mental health treatments, and shares his or her experience with a "novice" patient to support him or her. At this stage, the patient-turned-peer practitioner has been able to step back and conceptualize their experience to help others.

Health professionals: include medical and nursing staff, health managers and all other professional categories at the HUG, whether or not they are first-line in patient relations.

Students: future healthcare professionals learn about and train for this partnership relationship with patients during their studies.

Patient associations: the role of patient associations is to breach the isolation brought on by illness, raise awareness and recognition of poorly understood conditions, and defend the rights of users of the healthcare system.

Politicians: establishing healthcare policies requires understanding and knowledge of patients and relatives.

Members of the public: without being directly concerned by a disease, members of the community have an interest in health and participate in actions and projects.

Health institutions: in addition to the Geneva University Hospital, the Office Cantonal de la Santé (OCS), the Institution genevoise de maintien à domicile (IMAD), the Haute école de santé de Genève (HEDS), the Centre interprofessionnel de simulation (CIS) and the Faculty of medicine of the University of Geneva are all stakeholders in the partnership.

The multi-dimensional dynamic process is illustrated as follows:

The involvement of the patient is decisive but it is not a given. It fluctuates over time, shaped by events, the patient's state of health and wishes, and the environment. Patient involvement can take many forms. Professional staff look out for these shifts and act accordingly.

One critical consideration: the patient's involvement may generate fears that can stand in the way of the partnership. Patients may fear that expressing an opinion or making a request could impact the care they are given. Meanwhile, professional staff may worry that patient's positioning and argumentation could call into question their knowledge.

Professionals encourage the patient to get involved, and seek to engage them as early as possible in the partnership whether it involves healthcare or an activity in teaching, research or quality of care.

How to overcome this challenge?

• Consideration of the other positions the patient as a privileged partner. This consideration is mutual. It leads to recognition of the value of the experiences and knowledge of both the patient and the professional staff, as well as in the knowledge of each other's limits, whatever the area of practice of the partnership.
• Trust is built and maintained day by day. Open, participative communication, characterized by listening and availability, is a prerequisite for establishing this trust. Visibility into the organization of the day's care is reassuring for the patient.
• Support:The announcement of a diagnosis during a consultation is very often experienced with emotional shock. The patient needs support and listening to help him or her understand the information and be able to make a decision. Support resources are available within the medical and nursing teams, as well as with family caregivers, patient associations, volunteers and chaplains. For other areas of activity, support for patient and professional partners is also essential, and this is the role of the PP+3P platform, which will inform, guide, moderate and thus establish a climate of trust.

This collaborative approach leads us to:

Decide and act together:discuss, negotiate, argue with honesty and transparency, listen and finally define a common approach. Consensus will lead everyone to enrich themselves with the expertise of the other partner. Whether it's a partnership in care, in teaching, in a research protocol, in a quality project or in organization, the process is identical and applies in the same way.

The partners, their motivation to collaborate, the respective experiences, the field of activity concerned and the activity are all elements that will influence the quality of the partnership.

The involvement and commitment of patients and their caregivers can vary. This depnds on each case, the willingness of each person, their desire for commitment, their knowledge and their state of vulnerability. The other partners, the context, the mutual consideration and trust that are established are also part of the predetermining conditions.

Based on a 2016 analysis of HUG partnership experiences, four levels of involvement were identified reflecting the continuum of patient engagement.

Presence and/or information

• In care settings: patients and family caregiver partners participate, through their presence and active listening, in medical visits, professional staff consultations. These people are informed, at whatever level they wish to be involved, of their condition, treatments and medical follow-up.
• In other areas : p atient and caregiver partners contribute -through their presence and listening - to conferences and public health promotion events on various health topics.

The consultation

• In care settings: patients and caregiver partners exchange with healthcare professionals, share their experiences, ask questions relating to their health.
• In other areas: patients and caregiver partners express themselves in a variety of ways (orally, in writing, through art and social media) and on differing occasions: these people exchange with teaching professionals, share their experiences with patients and/or professionals, express their vision, their expectations for medical research.

Collaboration

• In care settings: patients and caregiver partners participate in shared decision-making regarding their care. They exchange expertise, present arguments and negotiate together to identify the most appropriate treatment plan in a given context while respecting their values and preferences.
• In other areas: patients and caregiver partners express their opinions, which are recognized as equally valid as those of healthcare professionals wheter in project selection panels or in defining institutional strategy.

The partnership

• In care settings : patients and family caregiver partners self-manage their care, especially in chronic disease situations.
• In other areas: patients and family caregiver partners take concrete action at the same level as healthcare staff in the development of training, projects, etc.

The results obtained over the five years of the project demonstrate the success of this strategy. Over 650 patients and family carers have been recruited and 10% of them are regularly involved in all kinds of activities. Whilst the priority of the partnership is healthcare and the quality of care and services, collaborations in teaching and research have become common place. The presence of and collaboration with patients in organizational activities are also increasingly frequent.

Patient involvement, for partnerships conducted in co-decision and co-action, is becoming standard.

Seamless integration into the partnership and successful collaborations have generated momentum, convincing even hesitant staff. The Patients Partners +3P program continues to drive this true transformation with new initiatives: including the appointment of patient representatives in hospital departments and the recognition of caregivers during patient hospitalizations. These actions are part of the HUG 20+5 Strategy, endorsed by the HUG Executive board. 

This transformation in the relationship between patients and professionals is made possible by the commitment of each and every one of us. While the program is institutional in scope, change begins with the individual- it involves all of us, in every moment. Partnership must be embraced daily, and the HUG partnership model stands as both the benchmark and foundation of this relationship.