What are the different forms of participation ?

All the definitions and conceptual frameworks observed have in common the underlying idea that we want to highlight: patient participation is a means to achieving a goal, never an objective in itself. The general objective is to improve the health system in a broad sense, and the concrete goals are related to the environment (or the dimension) in which the patient participates, as well as to his degree of participation.

The 4 dimensions are:

1. Patients’ participation in their own health

2. Participation in the improvement of services and the organization of institutions

3. Participation in the field of knowledge (research and teaching)

4. Participation in the field of health policy design

In turn, these different dimensions are divided into the following categories according to the degree of participation:

? Consultation

? Collaboration

?Partnership and shared leadership

Moreover, it should be noted that this scheme presented and widely used in the literature on patient participation can be useful for an institution (from a hospital or research center to a public regulatory organization) to position itself at one level or another of participation with the patient.?

How do patients participate in their own state of health ?

This dimension of participation refers to the concept of patient activation described above and refers to the participation of the patient in his own state of health, i.e. in the health care received. The literature of a few years ago on patient participation in the health care system focused largely on this dimension, which is understandable as the received care is the most obvious link between patient and provider of care.

This dimension of participation refers to the relationship between the patient and the professional and strongly emphasizes the communication skills of the patient and the team of health professionals: from the stage when the patient is informed of his diagnosis and understands it to the treatment decision process shared between the patient or his relatives and the professional health team. Making decisions in a shared manner would be a way of making participation effective.

In a broader framework, it would be necessary to determine how the professional leaves sufficient space to understand and respect the patient’s values and preferences. More and more professionals believe that the paternalistic model of clinical practice is completely inappropriate in most cases.

In the deliberative model, the physician and patients discuss what values are most appropriate for the patient in each specific circumstance. Whatever the circumstances, the role of the physician is to persuade without forcing. Focusing attention only on the behavior of the patient and the health care provider ignores the fact that much of what happens in the care environment is affected by the policies, processes and culture of the provider’s organization, as well as the public policies from govern regulators (and funders).

Engaging patients and consumers in organizational design, at government levels and in public policy making can generate better systems to support patient participation in care. If we add the value of formalizing and operating such systems thanks to scientific evidence, better decisions will be made at all levels.

As a result, the current debate is widening to other dimensions such as the organizational design of health care institutions, health planning at the macro level and the field of knowledge.

How do patients participate in the improvement of services and in the organizational design of institutions??

In general, patient/citizen participation is considered for the co-design of services or regarding policies for evaluating service delivery. The value provided by a service is always defined by the user and not by the provider. Involving people in the redesign of the services they receive enables the services to be adjusted to real needs and is in turn a useful strategy to promote their implementation and evolutionary development. People’s participation requires adequate tools and spaces to be effective.

The organizational design and improvement of services within health care institutions is one of the dimensions where the concept of patient participation has developed in recent years. As in the previous dimensions, the degree of participation can be classified into three levels.

1.Consultation:

Projects with a low degree of patient involvement in which patients are consulted on an ad hoc basis on specific aspects of their experience in 15 the institution.

Some examples:

? Including patients in a hospital staff meeting to discuss their stay in the institution and highlight positive aspects, identify negative aspects, present ideas for change or improvement.

? Working with patients to develop or revise audio-visual or paper tools such as brochures for patients and families, informational videos or instructions.

? Consulting patients’ councils on the type of communication strategies in order to improve quality.

? Systematically collecting patients’ opinions through satisfaction surveys, mailboxes for complaints and suggestions, online questionnaires, etc.

2. Collaboration:

Participation of patients in continuous work teams, such as a patient and family committee.

? A patient and family committee is a formal group that meets regularly to encourage active collaboration between clinicians, hospital staff, patients and families in making policy and program decisions.

? Committees can identify opportunities to improve the patient and family experience, give advice on policies and good practices to support and encourage their participation, and make recommendations to better measure, quantify and evaluate. Patient participation in committees assessing the quality of care processes provides a valuable complementary view.

3. Partnership:

The highest level of involvement of patients and relatives in a healthcare institution is one that not only includes patients as members of strategic committees, but also gives them a co-leadership position. An archetypal example is the quality and safety committees. In these committees, patients can participate in the following tasks:

? Review and interpret the results of patient satisfaction questionnaires and other data related to hospital quality and safety and developing strategies for improvement.

? Participate in projects to improve the quality of care.

? Turn to nurses, medical staff and other staff who focus on improving communication, safety and quality during training sessions

How do patients participate in the field of knowledge (research and teaching)??

Several studies show that the accessibility and perceived usefulness of existing research to the patient is very limited. Solutions include:

? On the one hand, involve patients and the large public to ensure that the research carried out is the most appropriate and not only that which is developed according to the interests of sponsors (e.g. pharmaceutical companies) or the personal interests of professional researchers.

? On the other hand, to argue that patient and citizen participation is not only about making surveys more appropriate, but also about ensuring that research is carried out properly. Patient and public input can help to ensure that researchers clearly explain what their study is about, that they communicate more sensitively with the public, but also that studies are carried out to make research more effective, and that the communication of the results to citizens is improved.

Patient participation in clinical research projects can also be classified into 3 levels according to the degree of involvement :

1. The consultation can be very concrete and concise on a specific aspect, or it can be a consultation integrated into the research process.

2. In the case of collaboration in a research project, patients have even more control over the study, as they assume the role of collaborators or even co-producers.

3. The highest level of involvement is patient-driven research. In this case, patients and researchers systematically collaborate in all phases of the study, from defining the scope to disseminating their results, under the active guidance of patients or their representative organization.

In the field of health, a movement promotes citizen participation in the definition of research priorities. Patient and Public Involvement (PPI) is an example of such approaches to involve citizens in setting research priorities or evaluating (monitoring) the methodologies that are used in research projects. The current opinion under the aegis of Open Science is also moving in this direction of information sharing project which includes these perspectives of opening up research processes to civil society, and the SARIS (System for the Evaluation of Research and Innovation in Health) which includes the participation of stakeholders (patients and civil society) as an obligation for the proper evaluation of studies.

To a lesser degree, patient participation in medical health education is also developing in various universities around the world, such as the University of Montreal, where since 2010 a new relational model based on association has been developed between patients and healthcare professionals. This collaborative model is based on the recognition of patients’ experience (and knowledge) and its complementarity with the healthcare professional’s scientific knowledge. This association is part of an ongoing involvement with the patient and may be applied to the fields of health, professional training, education and research. Another notable example is the Université Libre de Bruxelles (ULB). According to the ULB’s University Certificate in Partnership with Patients Program, the first university certificate in the world in this field, there are 3 main types of patients according to collaboration: the patient involved in his care, the patient involved in improving the health system, and finally the patient involved in the health system through teaching

How do patients participate in the design of health policies?

At the level of public policy design, participation focuses on the development, implementation and evaluation of health policies and programs at national, regional and local levels. Patient engagement in public policy, often described as “citizen” or “public” engagements, helps to ensure that the health system is oriented and responsive to the perspectives of patients and citizens.

Patients work with community representatives and decision-makers - for example, government officials, health planners and health care providers - to solve health and social problems, shape health policies and set priorities for resource use. At the highest level of patient involvement in the design of health policies, patients or their representatives should set priorities and make policy and program decisions at the same level as technicians.

However, it is still exceptional for patients to have significant power and?influence in this dimension.

(Extract of SPX Position Paper THE PATIENT’S PERSPECTIVE IN THE HEALTH CARE SYSTEM, November 2020)