Patients as stakeholders in their cancer journey

The Unicancer network places the patient at the heart of its action, and has reinforced, over the last few years, the scope of its commitment to integrate the “patient experience” in its practices. Innovation translates into involvement of patients throughout their healthcare pathway, as real partners to help improve practices.

What is the “patient experience”?

To optimise the healthcare pathway and support for each of the 530,000 plus patients welcomed each year in the French comprehensive cancer centres (Fcccs), the professionals in our network are developing their practices by giving a central place to the integration of patients’ experience and feedback.

If this concept is essential to us, it is because it consists in considering patients not only with respect to the disease from which they are suffering, but as persons in their own right, with the aim of ensuring a truly comprehensive cancer care pathway. Our teams will take into account the experience, feedback and expectations of the patients involved, in particular by setting up dedicated working groups, surveys and other experience-sharing tools. We therefore fully integrate the “patient experience” concept in our practices.

Partnership with patients at the heart of the Unicancer network approach

Acknowledgement of patient preferences, via shared decisions, is a seal of quality in their treatment. This is why patients and/or carers, in close collaboration with professionals, are already actively involved in the work of the Centres:

• They are members of certain bodies (Users Committee, Pain Management Committee, Vigilance Committee), of working groups on the certification by the Haute Autorité de Santé (HAS), and of patients committees^[1] (see section below); they can thus be involved in writing the hospital’s development plan or new architectural projects, for example…
• Involvement of patients and their families in the Centres’ initiatives is very rich and highly rewarding: patient auditor paired with a professional,  patient involved in doctor/carer training, “resource patient” for other patients….

In its commitment to strengthen the patient experience dynamic, Unicancer has created a working group dedicated to this theme, in order to make proposals and strengthen the integration of patients and their families in the life of each centre. This group, which includes a former patient, should make it possible to:

• Encourage Fcccs to strengthen or consolidate their approaches to the patient experience
• Develop actions to improve the patient experience in the Unicancer network
• Identify projects, internal or external to the network, that focus on these areas, in order to share these initiative

To go even further, Unicancer has established major partnerships:

• Partnership with the Institut français de l’expérience patient (IFEP – French Institute for Patient Experience) to enable cancer centre patients to benefit from the expertise and resources provided by the Institute: theme-based working groups, experience sharing platform, international monitoring, etc.
• Partnership with the association SPX (Shared Patient Experience) in order to consolidate the patient experience in all Centres: sharing of good practices, experience sharing platform, network of experts, etc.

These partnerships will allow for greater integration of the patient in strategic decision-making and in the organisation of their care pathway. They will also make it possible to reaffirm the patient’s experience as a lever for the improvement of care and the emergence of new practices.

Patient committees within FCCCs

Fully involved in the life of the French comprehensive cancer centres (Fcccs), these committees enable volunteer patients to participate in projects to improve the Centre that cares for them, based on their experience of cancer and care in the establishment (the term “expert patient” and/or “partner patient” is also used).

Made up of patients, patients’ relatives and healthcare professionals, they are led by coordinators with a variety of profiles: doctors, quality managers, business managers, communicators, etc.
Consultative, with volunteer members, they represent a space and a tool for exchange, sharing and integration of patients in the life of the Centres, so as to reinforce the involvement of patients in their journey of care and in the functioning of the Centre in which they are treated.