Overview on Patient Centricity in Cancer Care

Abstract

Successful implementation of treatment in cancer care partially depends on how patients' perspectives are taken into account, as preferences of health care professionals and patients may differ. Objectives of this exploratory research were (I) to identify patient preferences and values (PPVs) in cancer care as indicated by patient organizations (POs), (II) to determine how these PPVs are captured in cancer care guidelines and (III) to review how guidelines take into account these PPVs. Based on a survey developed and completed by 19 POs, a literature review was conducted to analyse how patient perspectives are incorporated in oncology treatment guidelines. Based on survey results traditional health technology assessment value propositions of oncology care, such as extended life, treatment-free remission and pain reduction, were also highly rated by POs. However, the heterogeneity of cancer PPVs were clearly reflected in the survey results. PPVs in cancer care guidelines were mostly limited to those micro-level aspects that are strictly related to health care provision, such as side-effects and comorbidities. Patient experience, emotional support and convenience of care were relatively neglected fields in the reviewed guidelines. Patient engagement was rarely presented in the guideline development phase. POs believe that patients should be encouraged to take an active role in their own care due to the heterogeneity of cancer patients and PPVs. Even if patient-centricity is a leading paradigm in cancer policy, based on our research it is not yet standard practice to include patients or POs at all appropriate levels of decision-making processes that are related to their health and well-being. Patient engagement should be an integral part of cancer care decision-making. This complexity must be reflected throughout policy making, avoiding a population level “one-size-fits-all” solution.

Holistic view of patients with melanoma of the skin: how can health systems create value and achieve better clinical outcomes?

“…Considering the VBHC approach, a shift in healthcare systems must soon occur. Current healthcare units, particularly those dedicated to cancer, must evolve to integrated, patient-centred systems, where patients are engaged in the decision-making processes and their feedback is weighted to improve cancer care and health outcomes [26, 29]. Therefore, integrated practice units (IPUs) are focused on a multidisciplinary, comprehensive, holistic plan of action that covers the entire cycle of the cancer patient’s care setting [30].…”

“…Besides well-organised healthcare professional teams, a healthcare system based on patient-centricity must also establish better patient–physician relationships and involvement of patients in the decision-making process. Patients should be empowered and educated to participate in scientific and policy discussion, advocacy patient groups and committees as ‘patient experts’ [23, 29, 36]. In this context, patient-reported outcome measures (PROMs) are being extensively used to create the foundation for the action of this multidisciplinary approach.…”

“…Although the ‘ one-size-fits-all ’ view is no longer applicable, it is challenging to define measures that apply to all genetic and therapeutic characteristics of each patient and bring real-life benefits to every patient [29]. Nonetheless, providing care to a selected group of patients (personalised medicine) is a way to improve results, in terms of quality, patient’s satisfaction, treatment access and efficiency [36, 37].…”

“…These interfaces are critical to follow the entire full-cycle process, guaranteeing the continuity of patient’s care. Integrated information systems for medicine, held on e-health infrastructures and systems that give better use to available resources, should be based on the following four highlights: simplification, autonomy, monitoring and efficiency [29]. Integrated systems allow the comparison of inter- and intra-regional differences and demands, to improve sources of knowledge of clinical units and, most importantly, to measure healthcare outcomes and costs [41–43].…”

Use of Patient Preference Information in Benefit–Risk Assessment, Health Technology Assessment, and Pricing and Reimbursement Decisions: A Systematic Literature Review of Attempts and Initiatives

“…Moreover, researchers and policymakers have developed tools to assess PPs and initiated a variety of efforts and attempts to better include these PPs in benefit-risk assessment (BRA) and HTA decisions. As it still remains unclear how patient voices may formally be included in decision making and how rigorous patient evidence must be for acceptance by these decision makers (2,12,(14)(15)(16)(17), the primary objective of this review is to clarify the PP elicitation methodology and to examine the use of and available guidance for the integration of PPs in decision making.…”