The survey filled in by PO leaders intended to explore what patients deem to be of most value to them. The final survey included three groups of items/topics: The first set of questions were focusing on descriptive general characteristics of the POs (way of funding, number of payed and voluntary staff). The second group of items were related to POs perception on PPVs (aspects of care and their importance rated on a 5-point ordinal scale, fields for improvement in cancer care formulated as an open-ended question), while the third group contained open-ended questions on involvement of POs into decision making [involvement of patient representatives to health technology assessment (HTA)]. (For the actual questions, please refer to the headlines of the corresponding tables) POs were informed about the objectives of the survey, including the notion of presenting aggregated results in a scientific manuscript. As the survey was filled in by POs and only general policy questions were surveyed without collecting any clinical personal data, after legal consuelling no ethical approval was considered to be necessary for the study.

Outcomes of the explotarory research and survey results were used to develop a hierarchical classification and data extraction spreadsheet to collect information on PPVs in the clinical cancer care guidelines. The data extraction focused on the presence of three main categories in guidelines, including: (I) patient empowerment related PPVs, (II) health outcomes related PPVs, and (III) patient management related PPVs in the guidelines (see Table 1). The draft data collection spreadsheet was pre-tested using literature references in the initial exploratory research and appeared to be a relevant tool for further data collection.

The primary purpose of the systematic review was to give a general overview about the representation of PPVs in guidelines. The following keywords were identified based on the survey and the explotarory research: (malignan^*[Title/Abstract] OR oncolog^*[Title/Abstract] OR cancer[Title/Abstract]) AND (guideline[Title/Abstract]) AND (patient empowerment OR patient value OR patient perspective OR patient preference OR patient centered OR patient view). Pubmed was used as a search engine; search strategy was finalized on 2nd September 2016. Title and abstract screening was done by two independent reviewers by adapting the PRISMA checklist (Jahan et al., 2016). The PICOS—Population-, Intervention-, Comparison-, Outcome- and Study design-based—criteria, originally developed to randomized clinical trials, were restricted to intervention- and study design-based elements. All oncology guidelines focusing on cancer care-related interventions met our inclusion criteria. Hits were further restricted to English language materials published in the last 5 years designated as guidelines by the Pubmed engine. Guidelines eligible for full text review were subject of data extraction.

Survey results indicated that the existence of a public HTA agency correlates with patient involvement with an exception of two countries. According to the systematic review, in cases where the process of patient engagement in guideline development was explicitly described, micro level PPVs were represented more significantly. This underscores the importance of including the patient voice in the discussion of a vast number of issues related to cancer care. To ensure effective input from patients and respective POs, both patients and the POs need to be better educated and informed to effectively engage in the evaluation or assessment process. Various ongoing initiatives, such as the European Patients Academy on Therapeutic Innovation (EUPATI) organize seminars to educate patients to participate in scientific and policy discussions and advocacy. Participation of patients and POs must be supported by easy-to use tools that consider the individual perspective of the patient in the development phase of clinical guidelines and policy recommendations. The instances of patient inclusion either at the institutional level (e.g., through patient involvement in the activities of the European Medicines Agency (EMA) in the European Union, the more fragmented approach by the Food and Drug Administration (FDA) in the United States, or the bottom-up approach taken by the National Institute for Health and Care Excellence (NICE) in the United Kingdom) or via ad-hoc participatory models attempted at the national level in certain countries, often lack meaningful participation and expectations from all stakeholders. Among ASCO (Schnipper et al., 2015, 2016), ICER (2017), MSKCC (2017), and NCCN (2017), only ICER included patients directly in the developmental process (Milken Institute, 2017). These value frameworks are the catalysts for addressing evaluation of expensive cancer treatments; however, much work needs to be done for those efforts to provide value to the actual patients, such as: (I) increase the overall document clarity by providing a secondary release of the same documents written in patient-friendly language, presented in a clear manner, (II) include PPVs, which may require inclusion of items outside the clinical realm, (III) meaningfully include the burden of illness on households and (IV) patient heterogeneity in value consideration.

Frequent referencing of patient heterogeneity in the guidelines correlates well with the survey results; patients have various levels of disease burden, cancer stages, individual values and cultural backgrounds that equally affect their personal choices. There is also a strong consensus that the treatment strategy for each patient has to be determined jointly by the physicians and the patient on micro level, as needs and preferences of individual patients can be different (Elwyn et al., 2012; Martinez et al., 2015). However—contrary to the guidelines—survey findings showed that personalized medicine was not yet perceived as a crucial area of cancer care among survey respondents, which seems to be contradictory to recent trends in cancer care (CMBRP, 2016).

Based on our survey results, feedback from patients was rarely taken into consideration while aiming at improving quality of cancer care, even though such survey tools had already been developed in the oncology field (Booij et al., 2013; Tremblay et al., 2015; Windham et al., 2015; King et al., 2016). This supports the contention that while patient-centricity is enshrined in global (via World Health Organization), regional (e.g., European Union) and national healthcare policies, it has yet to take shape in practice. In comparison to health care, in the field of consumer products, although fueled by commercial interests, the practice of seeking direct feedback from consumers on what is relevant, appealing, and satisfying to them has been globally established and a recognized model of action for decades. However, such practices are not generally prevalent in the cancer field, despite the fact that the impact of decisions made by health policy makers, experts at HTA level or healthcare professionals directly impact the lives of patients and their families. Quality in cancer care may be improved by further utilization of PREMs. Patient satisfaction measured by PREMs may be an important criterion in performance based reimbursement of health care providers based on current discussion in several countries, including the United States (Weldring and Smith, 2013) and the United Kingdom (Taylor et al., 2015; Burns et al., 2016).

Based on our survey results we cannot conclude that there is any aspect of cancer care referred to in the survey that is not relevant to the cancer patients. There were no items with >3.8 mean value, indicating the importance of each cancer care related item. Key value propositions (e.g., extended life, treatment-free remission and pain reduction) are in line with current value frameworks developed by ASCO, ESMO, ICER, MSKCC, and NCCN. Paradoxically, around only half of the reviewed guidelines addressed extended life, treatment-free remission and palliative care aspects of the treatment cycle. There are two potential explanations for this: either these objectives are too obvious for cancer care, or guidelines for cancer screening were not dealing with such requirements.

Survey findings highlighted the necessity of guidance for managing side effects, but clinical guidelines seemingly addressed this need. However, although serious adverse events and acute complications were mentioned, long-term and daily life affecting mild-to-moderate side-effects were usually lacking fields in the reviewed publications. This finding is in line with Basch et al. (Basch, 2016) stating that “chronic low-grade toxicities” are mostly ignored in current value frameworks. Nonetheless, initiatives to assign more importance to such mild-to moderate and daily life-affecting adverse events are on the horizon. ASCO—due to the high volume of comments received after having published their framework (Schnipper et al., 2015)—updated the original version and included also mild-to moderate adverse events in the updated framework.

Interestingly, timeliness of diagnosis and treatment was rather underrepresented in current guidelines and neither was mentioned in the survey as field for improvement by PO representatives. However, previous survey results indicated the high relevance of these aspects of care according to Booij et al. (2013) who found that the average importance score of “early treatment initiation after diagnosis” and the item of “being referred to hospital as quickly as you would like” were the two most important quality aspects of care, being assigned equally 3.72 points on a 4-point Likert scale by cancer patients. If the diagnosis or treatment is delayed due to waiting lists, the patient may not be able to benefit from the treatment, and so scarce health care resources could have been better spent elsewhere (Rutqvist, 2006).

The relevance of interpersonal communication was mentioned in 13 guidelines. However, neither the guidelines nor the survey respondents highlighted the need for more efficient emotional support. This is in line with the findings of Booij et al. (2013) and Windham et al. (2015) who both identified psychological and emotional support as being underrated by survey respondents: Booij et al. found that the average importance score of the item entitled “It is regularly checked if you need help dealing with the emotions brought about by the disease and treatment” was only about 2.81 on a 4-point Likert scale. Windham et al. (2015) noted that the mean frequency rating of the item “Having your doctors be sensitive to your emotional reaction when telling you your diagnosis or test results” was only 4.54 on a 5-point Likert scale, being placed 20th on a list of 24 items.

Syreon Research Institute received research grant from Lithuanian Cancer Patient Coalition (POLA) to conduct the systematic review part of this study. The content of this paper, as well as the views and opinions expressed therein are those of the Authors and not the organizations that employ them. The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.