‘Share your views’—international consultation informs a patient engagement strategy for the Multinational Association of Supportive Care in Cancer

Abstract

Introduction Engaging with patients and the public (consumers and community) enhances the relevance of cancer control developments; however, challenges remain to integrate into processes. Medical and other professional societies are well-positioned to foster and endorse best practice. Methods Between October and December 2021, the Multinational Association of Supportive Care in Cancer (MASCC) conducted a global consultation with those who identified as “people affected by cancer”. Recruitment to an online cross-sectional survey was by a combination of purposive and convenience sampling to determine preferred terminologies and experiences with MASCC and other cancer-related societies. Results The survey was completed by 343 respondents from 29 countries, a majority being female (78.1%) and younger than 60 years of age (62.1%). Respondents preferred to be identified as ‘patient’ from a set of defined terms; however, this only accounted for 49–67% of selected response across geographical regions. Only 22.2% of respondents had engaged previously with MASCC, of whom 90.8% reported a positive experience through involvement with education and information, networking and collaboration, and practice guidelines. Respondents perceived areas of opportunity as early involvement in decision-making, educational initiatives, open communication, and information sharing. Across all geographical regions, responders chose a preference to contribute to future consumer research (53.0%), policy (31.7%) or consumer engagement activities (56.9%) including participation in a conference session (65.0%) or patient day (47.9%). Conclusions This survey provides a first insight into how consumers wish to engage with MASCC. These values will be embedded into a strategy that aims for effective and sustainable partnerships with multinational consumers.

Survivorship care for people affected by advanced or metastatic cancer: MASCC-ASCO standards and practice recommendations

“…Healthcare systems must address the significant barrier of resource allocation, ensuring that adequate resources are available to support staff in their ongoing educational pursuits [ 11 , 13 , 17 , 24 – 26 , 29 , 31 , 63 , 66 ] particularly in addressing the needs and specifically inviting participation of and taking into account the perspectives of those with advanced or metastatic cancer. Their lived experiences enhance the relevance and effectiveness of educational material for the cancer survivors and their caregivers [ 4 , 13 , 17 , 28 , 29 , 66 , 67 ].…”

“…cancer centers, community) need to be provided with appropriate levels of human resources, equipment, facilities, as well as leadership who value, support, facilitate, and appropriately invest in survivorship care [ 11 , 63 , 86 – 88 ]. Continual evaluation of these services is important to ensure sustainability and to show positive return on investments to advocate for further investment in survivorship care for people affected by advanced or metastatic cancer [ 11 , 54 , 60 , 67 , 84 – 86 ].…”

“…Active involvement of people affected by advanced cancer in the co-design of research is critical to better meet the needs of end-users and enhance the rigor, relevance, reach, and impact of survivorship research [ 5 – 8 , 23 , 24 , 28 , 29 , 93 , 94 ]. To enhance accessibility of high-quality survivorship care for this population, research trials should broaden eligibility criteria to explicitly include people affected by advanced or metastatic cancer in clinical trial design and proposed survivorship care research questions, rather than focusing solely on earlier stage disease post-curative-intent treatment; address barriers to enrolment and participation at all system levels; and consider the potential use of patient navigators or other facilitators needed to promote knowledge of, entry into, and transition out of cancer clinical trials as appropriate [ 7 , 28 , 29 , 67 , 94 ]. To facilitate harmonized data capture, global collaborative sharing of data, and use of data repositories for future research; it is important to constantly and accurately record experience, treatment, and outcome data in clinical trials using standardized cross-cultural assessment tools, where available [ 4 , 6 , 17 , 20 , 23 , 24 , 28 , 29 , 67 , 70 , 72 , 95 – 100 ].…”

‘Just Google it’—A scoping review of online mental health resources for survivors of breast cancer

“…32 These findings reiterate the need to engage with patient partners/ advocates and consumers to co-design more evidence-based online support that are communicated in a manner in which people with varied health literacies can understand and implement. 33 It is critical that health professionals and creators of health care related content work collaboratively, to create online initiatives and content, to ensure patients are accessing reputable online resources and evidence-based (or expert guided) self-care strategies. 15 Our findings identified several key elements that are currently lacking.…”

“…With the variability of information available online, patients are limited and not well equipped to best manage their transition to survivorship despite a call for more high‐quality, person‐centred resources, 31 that deliver sustainable results 32 . These findings reiterate the need to engage with patient partners/advocates and consumers to co‐design more evidence‐based online support that are communicated in a manner in which people with varied health literacies can understand and implement 33 . It is critical that health professionals and creators of health care related content work collaboratively, to create online initiatives and content, to ensure patients are accessing reputable online resources and evidence‐based (or expert guided) self‐care strategies 15 …”