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The value of accreditation for cancer patients: from end users to partners

Abstract

The Organisation of European Cancer Institutes (OECI) accreditation program is a resource for European cancer patients, insofar as it certifies the quality and organization of cancer care in European cancer centers. As the report on the accreditation program implementation in Italy showed, cancer patient organizations and their volunteers play a fundamental role within the cancer institute, particularly in informing and guiding cancer patients. This article explores Italian best practices and suggests embedding the lessons learned in the OECI accreditation program. Furthermore, the article launches the concept of a European Cancer Patients Bill of Rights in cancer institutes, to be used as a tool by both OECI centers and European Cancer Patient Coalition members to enhance the quality of the collaboration between cancer centers and patient organizations.

Tumori 2015; 101(Suppl. 1): 60 - 63

Article Type: REVIEW

DOI:10.5301/tj.5000468

Authors

Francesco Florindi, Francesco De Lorenzo

Article History

Disclosures

Financial support: No financial support.
Conflict of interest: The authors declare no conflict of interest.

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Introduction

Volunteers in public oncology hospitals in Europe are a frequent complement of cancer care (1). The degree to which volunteers are integrated into the hospital care services, their training, the scope of their services, their management, and their evaluation vary considerably between countries but also between hospitals within the same country. Many of the 378 European Cancer Patient Coalition (ECPC) members present in 44 EU and non-EU countries are directly involved to some extent within cancer institutes and hospitals, and make us aware of the cultural, social, and organizational differences existing in patient/healthcare provider collaboration in Europe.

In general terms, we experienced differences between northern and southern Europe regarding the involvement of patients’ organizations in hospitals. In northern Europe, e.g., in the United Kingdom, there is a tradition of charities and volunteering that represents the backbone of patient support in hospitals. According to a recent report of The King’s Fund (2), there are an estimated 3 million volunteers in both the voluntary sector and public services in comparison to the 1.4 million people working in the National Health Service and 1.6 million in social care. This structured hospital volunteering in fully embedded in the patients’ pathway.

In southern Europe, the situation is different in that there is not such a strong volunteering tradition and volunteering in hospitals is not as structured as in the United Kingdom, but it tends to depend more on the patient organizations that make an agreement with hospitals to place their volunteers. For example, cancer patient organizations in Greece recruit volunteers mostly among their members, offer in-house training and supervision developed by their social workers/psychologists, and have an oral agreement with oncology hospitals in their region for placement of volunteers to assist cancer patients in the waiting room, library, or chemotherapy. The absence of a structured hospital volunteering movement, as in the United Kingdom, is not due to the fact that member states cover all needs of their citizens but rather for cultural reasons, among them strong family ties. In southern and eastern Europe, if a family member gets sick, not only the close but the extended family and friends are involved, and they take turns caring for the patient and offering help to the family.

Neither approach works fully: the northern approach creates financial burdens for patients and nonprofit organizations, which in times of financial hardship and austerity might not be sustainable. On the other hand, the southern patients’ support model is not sustainable either, being impacted by the change in the demographics in Europe, with a sharp increase in the number of persons above 60 years of age, and with a decrease in births: these factors are leading to a situation where there are fewer young people to care for aging parents and relatives (3).

The economic crisis in Europe added a further level of complexity to these national and regional differences in the organization of cancer patient organizations. During the last decade, in fact, the financial strain on European healthcare systems has added to technological innovation and demographic changes, which are jointly impacting access to and quality of healthcare (4). The steady increase in European countries’ expenditures threatens sustainability and exercises pressure on the quality and efficiency of healthcare services. These concerns have led more than one European healthcare system to consider not only using their human resources more effectively, but also volunteering resources to face the increased demand for quality healthcare.

The Organisation of European Cancer Institutes (OECI) accreditation program is an invaluable resource for public health decision makers, national and local healthcare professionals, and cancer patient organizations. The recent meeting on the update of the Italian accreditation project, led by the Italian Ministry of Health, gives ECPC the chance to bring forward a best practice that can be used as an example to draw conclusions and suggestions on the potential collaboration between patient organizations and cancer institutes. The ECPC believes that the best practices showcased in this article will also be examined by OECI, with the final aim of being included as new criteria for the accreditation of cancer centers.

The results of the “Tailored Accreditation Model for Comprehensive Cancer Centers: Validation through the Applicability of the Experimental OECI-Based Model to the Network of Cancer IRCCS of the Alliance Against Cancer” project were presented by Simon Oberts Femke Boomsma at the meeting. Among the findings, we were pleased to see that the 11 Italian Comprehensive Cancer Centres (Istituti di Ricovero e Cura a Carattere Scientifico [IRCCS]) assessed were demonstrated to put patients at the center, providing key information and support, also owing to the collaboration established with representatives of the Italian Association of Cancer Patients (AIMaC) in each IRCCS (5). During the meeting, the experience of the AIMaC within the OECI accreditation program was showcased. This represents an example of how cancer institutes and patient organizations can collaborate to enhance patients’ experience, but also to streamline, standardize, and ultimately ameliorate the patients’ experience within the cancer institutes.

The AIMaC runs efficient and well-organized volunteering and information programs (6). This engagement started 10 years ago, aiming at offering interventions to cancer patients by specially trained volunteers in cancer centers and at home (7). Volunteers are selected following an interview with an expert of the volunteer program regarding his or her motivation and qualifications. The selected volunteers are offered a training program that is followed by a practice period, after the successful completion of which they are entitled to offer volunteer services.

The principles that govern the Italian training program of volunteers are as follows:

Offer individualized assistance by teaching and practice of the basic notions of communications focusing on the experiences with the disease and the needs of the cancer patient and family

A culture of information that is transmitted to the volunteers by teaching and practice in search for information on specific diseases and the rights of the cancer patient

The contents of the Italian curriculum are similar to those offered in Greece by cancer patient organizations. The differences are on the emphasis put by the Italian program on information and role playing, while the Greek training programs are more focused on psychosocial support.

A thorough selection procedure is often used to identify suitable and motivated candidates for the program, while most volunteer programs offer supervision sessions with an experienced psychologist.

Italian cancer patients, who have participated in surveys to assess the influence of the encounter with volunteers, reported that they had a positive opinion of the program and rated highly the importance of the presence of volunteers in the hospital and at home (8). In the latter case, volunteers were particularly useful to improve a patient's mood and to solve practical problems. The presence of volunteers seems to be helpful to both patient and family, since his or her frequent presence tends to become part of the care team but without direct involvement in the clinical activity.

An efficient oncology hospital volunteers program focuses on patient and family needs and is fully integrated with the activity of the care team. Such a program consists of several interlinked elements, such as volunteer profile and selection, the curriculum of the training program, organization, and professional supervision of the volunteer team, which respond to well-defined requirements and educational objectives.

Volunteer education, together with selection of suitable candidates and program organization, is fundamental for an adequate volunteer service in oncology that is focused on patient and family needs and is fully integrated with the activity of the care team. To achieve such an aim, well-defined requirements and educational objectives are essential. The Italian volunteer program was successful in developing a curriculum for voluntary service in oncology through a consensus procedure with the participation of experts.

Another fundamental success of the Italian patient associations is the establishment of a functioning and reliable cancer information service (9). Most of the informative supports were developed by AIMaC on national and international models or collaborations (i.e., the former Cancer Backup, now McMillan and Cancer Information Service of the National Cancer Institute, UK). Researchers, psychologists, and operators of IRCCS and oncology scientific societies like Associazione Italiana di Oncologia Medica, Associazione Italiana di Radioterapia Oncologica, Italian Federation of General Practitioners, and Italian Society of Psycho-Oncology contribute to these informative supports. The AIMaC information material includes 29 informative booklets on different types of cancer and related issues (for example, patient rights, nutrition, sexuality, fatigue, hair loss), in-depth publications on specific themes (prostate-specific antigen test, semen cryoconservation, weight loss), 2 DVDs on chemotherapy and radiotherapy, the www.aimac.it Web site (from which 96 drug fact sheets and 50 fact sheets on diagnosis, staging, and therapy for each neoplasm can be downloaded), and the www.oncoguida.it Web site (a directory of hospitals and voluntary organizations dealing with cancer patients in Italy). The AIMaC has also developed a national telephone helpline, where trained operators and psychologists give information along with the consultancy of professionals from the medical, psychological, and legal fields. The language used in the informative resources has been carefully chosen specifically for the layman: it is non-anxiety-inducing and clear.

The development of the OECI accreditation program in Italy showed an interesting result in relation to AIMaC experience within the IRCCS: information for cancer patients is sufficiently ensured wherever an AIMaC representative is working within the cancer institutes. This clearly shows one added value factor that oncology volunteers bring within the Comprehensive Cancer Center. The OECI accreditation program recognized the role of cancer patients and volunteers. In this sense, the program is a fundamental victory also for cancer patients’ organizations, which are finally recognized by the cancer institute’s themselves as a key partner and co-creator of health value to patients.

We congratulate OECI and the Italian IRCCS in particular for the outstanding work they have been doing. The next step is to duplicate success stories like the Italian one in other EU countries, to boost the uptake of best practices and the adoption of the key principles of patient-centeredness and collaboration between volunteers and cancer institutes. This process shall be driven following 2 connected yet autonomous pillars.

The first concerns the updating of the accreditation program. The OECI accreditation program remains a beacon not only for physicians and hospital managers, but also for cancer patients, who can and should rely on the accreditation results to seek the best cancer care available in their country or region. The accreditation is, therefore, the only reliable European guarantee cancer patients have that they are accessing the best care available to them. The importance of such a statement shall not be undermined, particularly considering the unmet needs and inequalities that European cancer patients experience today (10).

The Italian example is a model, not the praxis. In this perspective, the results of the accreditation program provide ECPC members with a fundamental tool to support the development of similar models in other European countries. To ensure maximum dissemination of the values and principles behind the successful AIMaC/IRCCS collaboration, we suggest OECI update the next accreditation program, inserting a specific section regarding patient involvement, which would focus on the following:

Granting oncology volunteers a more active role within the cancer institutes

Requesting the support of volunteers in those centers where there currently are no volunteers

The OECI accreditation program is of fundamental importance to ensure that the role of patients and patient advocates and volunteers is uniformly upheld in all OECI institutes, respecting at the same time the national and local traditions of patients’ and volunteers’ involvement. For this reason, the next accreditation program will envision a more specific role for cancer patients’ organizations and volunteers. Involving patient organizations should be a new standard for the accreditation, established in a precise, accountable, and evaluable manner.

The second main pillar for action is to sustain change at the local level with policy initiatives at the EU and national level. In this perspective, OECI and ECPC have already agreed to work together on the first European Charter of Cancer Patients’ Rights in Cancer Institutes, a document stating the basic rights to information, guidance, and patient-centeredness that each cancer patient can expect within cancer institutes. This charter, based on the successes of the accreditation program, the BenchCan Project (11), and the European Cancer Patients Bill of Rights (12) promoted by ECPC, will be presented in 2016. The ECPC and OECI leadership are currently working on a first draft of the document.

The final aim of the Charter is not to create burden for the OECI institutes, or to create new rights based on abstract theories, but rather to crystallize the values and best practices that are already in place in many OECI centers and endorsed by ECPC members, with the final objective to empower other organizations to promote those rights, setting up the standard for collaboration between patient organizations and cancer centers.

The work done by the 11 Italian centers in partnership with AIMaC demonstrates that the Italian oncology volunteering community is well-connected and well-organized within and outside the cancer institutes. Cancer patient organizations can provide targeted and relevant information to patients, tailor-made to their needs. This also demonstrates the potential level and quality of collaboration that patients and institutes can reach. The work of AIMaC is clearly a best practice, a model that can be exported regardless of the culture of volunteering of the different European countries.

Cancer patients have learned that they can actively shape and change the environment in which they fight their disease. The OECI and IRCCS have been demonstrated to understand the value that patients can bring within the cancer centers. It is time to set the bar higher for Europe, and to ensure that all European citizens affected by cancer are treated in cancer centers endorsing the same openness, sensitivity, and capacity to respect cancer patients’ rights.

Disclosures

Financial support: No financial support.
Conflict of interest: The authors declare no conflict of interest.
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Authors

Affiliations

  • European Cancer Patient Coalition (F.F.), Brussels - Belgium
  • Federazione Italiana delle Associazioni di Volontariato in Oncologica (F.A.V.O.), Rome - Italy

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