Patient Engagement in Cancer Research from the Patient’s Perspective

Spears, Patricia A.

doi:10.2217/fon-2020-1198

Cited by 13 publications

(4 citation statements)

References 53 publications

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“…Patient advocates are known to provide a valuable and diverse perspective and add a human face to the participant's case being reviewed. 8,9 There seems to be a gap in knowledge regarding the impact patient advocates have within MTBs. This is an area that would benefit from further research and could help contribute to establishing MTB membership guidelines.…”

Section: Discussionmentioning

confidence: 99%

Concordance in Molecular Tumor Board Case Reviews in the ASCO TAPUR Study

Perez,

Kleber,

Rothe

et al. 2024

JCO Precis Oncol

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PURPOSE With the advent of precision medicine, molecular tumor boards (MTBs) were established to interpret genomic results and guide decision making for targeted therapy in oncology patients. There are currently no universal guidelines for how MTBs should operate and thus variance can be seen depending on which MTB is reviewing the case. This study assesses the concordance of MTB recommendations when a participant case is reviewed by two different MTBs, establishes potential reasons for discordance, and advocates for the establishment of standard MTB operating guidelines. PATIENTS AND METHODS Participants with advanced cancer, who had exhausted all standard treatment options were screened for the Targeted Agent and Profiling Utilization Registry (TAPUR) Study. Cases were submitted for MTB review if the treatment proposal was outside the protocol genomic matching rules, or if multiple treatment options were identified. Of the 306 cases submitted for review by the TAPUR MTB from 2016 to 2018, 107 were randomly selected for secondary review by a different MTB group. Recommendations from the original review were not disclosed. Concordance between MTB group recommendations was assessed. Concordance was defined as agreement between MTB reviews on the genomic alteration and study drug match proposed by the clinical site. Thematic qualitative analysis was conducted for the discordant cases to assess reasons for discordance. RESULTS Complete or partial concordance was observed in 79% of cases (95% CI, 70 to 86; one-sided P = .25). Most discordant analyses were due to disagreements on the strength of evidence regarding efficacy of the proposed treatment (32%). CONCLUSION When presented with identical participant cases, different MTB review groups make the same or similar treatment recommendations approximately 80% of the time.

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Section: Discussionmentioning

confidence: 99%

Concordance in Molecular Tumor Board Case Reviews in the ASCO TAPUR Study

Perez,

Kleber,

Rothe

et al. 2024

JCO Precis Oncol

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“… 25–27 Matching patient advocates with research opportunities for involvement is also challenging, particularly when the dissemination of these opportunities is limited. 28 29 Finally, there is a lack of or fragmented reporting and critical reflection on patient involvement activities, 27 29 which calls for more research that compares, contrasts and evaluates different patient involvement initiatives. 30 …”

Section: Introductionmentioning

confidence: 99%

Patient organisations’ views, motivations and experiences on patient involvement in cancer research: a pilot study in Portugal

Roquette,

Crisóstomo,

Milagre

et al. 2024

BMJ Open

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ObjectivesTo characterise Portuguese cancer-related patient organisations and analyse their views, motivations and experiences on patient involvement in cancer research.DesignA multistakeholder group, comprising patient representatives and researchers, codesigned a questionnaire after a literature review, online sessions and collaborative mind maps. In May 2021, a survey was conducted among representatives of Portuguese cancer-related patient organisations, focusing on four dimensions: experience in cancer research; perception of its outcomes; motivations and expectations on patient involvement in research; and organisation characteristics.ParticipantsTwenty-seven representatives from Portuguese cancer-related patient organisations responded to the questionnaire, corresponding to a 64% response rate.ResultsAmong the surveyed organisations, 26% have participated in clinical studies. Their involvement occurred in few stages of the research process and, mostly, with low levels of engagement. They showed ‘great interest’ in participating in most research steps, although this is not reflected in a high perception of influence over these same steps. More than half claimed to have contributed to the increase in patient recruitment and to a better understanding of informed consent by patients involved. Ensuring that research results are more aligned with the true needs of patients is the greatest motivation. Also, our results suggest that the organisation’s number of employees and its integration into a European/International network play a relevant role in patient involvement in research.ConclusionsThis study provides the first in-depth characterisation of Portuguese cancer-related patient organisations and their views, motivations and experiences on patient involvement in cancer research. Most importantly, this study revealed that most of these organisations show great interest in being involved in different R&D stages to ensure that research results are aligned with patients’ needs. Their motivation should be turned into greater and more meaningful involvement in practice, so that the cancer community can benefit from the outcomes of truly patient-centred research.

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“…Nowadays, a significant change is taking place highlighting a patient-centered care pathway instead of a discipline-centered one ( 19 , 20 ). In this scenario, several initiatives have been developed to improve patient-centeredness in cancer care ( 21 , 22 ). In particular, strategies have been adopted worldwide to ensure respect for patient preferences, emotional support, physical comfort, information/communication needs, care coordination, family and friends' involvement, and access to care ( 23 ).…”

Section: Introduction: Integration Of Art and Technology In Personali...mentioning

confidence: 99%

Integration of art and technology in personalized radiation oncology care: Experiences, evidence, and perspectives

Casà

Dinapoli

Marconi

et al. 2023

Front. Public Health

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Cancer diagnoses expose patients to traumatic stress, sudden changes in daily life, changes in the body and autonomy, with even long-term consequences, and in some cases, to come to terms with the end-of-life. Furthermore, rising survival rates underline that the need for interventions for emotional wellbeing is in growing demand by patients and survivors. Cancer patients frequently have compliance problems, difficulties during treatment, stress, or challenges in implementing healthy behaviors. This scenario was highlighted during the COVID-19 emergency. These issues often do not reach the clinical attention of dedicated professionals and could also become a source of stress or burnout for professionals. So, these consequences are evident on individual, interpersonal, and health system levels. Oncology services have increasingly sought to provide value-based health care, considering resources invested, with implications for service delivery and related financing mechanisms. Value-based health care can improve patient outcomes, often revealed by patient outcome measures while seeking balance with economical budgets. The paper aims to show the Gemelli Advanced Radiation Therapy (ART) experience of personalizing the patients' care pathway through interventions based on technologies and art, the personalized approach to cancer patients and their role as “co-stars” in treatment care. The paper describes the vision, experiences, and evidence that have guided clinical choices involving patients and professionals in a co-constructed therapeutic pathway. We will explore this approach by describing: the various initiatives already implemented and prospects, with particular attention to the economic sustainability of the paths proposed to patients; the several pathways of personalized care, both from the patient's and healthcare professional perspective, that put the person's experience at the Gemelli ART Center. The patient's satisfaction with the treatment and economic outcomes have been considered. The experiences and future perspectives described in the manuscript will focus on the value of people's experiences and patient satisfaction indicators, patients, staff, and the healthcare organization.

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Patient Engagement in Cancer Research from the Patient’s Perspective

Cited by 13 publications

References 53 publications

Concordance in Molecular Tumor Board Case Reviews in the ASCO TAPUR Study

Concordance in Molecular Tumor Board Case Reviews in the ASCO TAPUR Study

Patient organisations’ views, motivations and experiences on patient involvement in cancer research: a pilot study in Portugal

Integration of art and technology in personalized radiation oncology care: Experiences, evidence, and perspectives

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