Patient‐led research and Advocacy Efforts

The treatment of children with cancer involves thinking transdisciplinary and building global partnerships. Many children with cancer have been cured using these methods, at least among the majority who reside in high-income countries. In spite of this, much work remains to be done in lowand middle-income countries. As Rafael et al. note, the fight continues, requiring strong partnerships and advocacy across multiple sectors. Efforts to cure children are grossly curtailed where pathways to diagnosis, access to clinical trials, and adherence to treatment remain significantly low. Across the globe, clinicians, academic researchers, and advocacy groups work together to support children with cancer. WHO's Global Initiative for Childhood Cancer launched in 2018 has given significant impetus to addressing inequities, improving access, advancing quality, and saving lives. Bringing together partners across sectors and globally to improve health and well-being of children with cancer and their families is one of the goals; ensuring every child with cancer has the best chance to survive, to live full and abundant lives, and to live and die without suffering. In the past, families of children with cancer have also played an important role in advancing cancer treatment, contributing to research, mobilizing resources, establishing non-for-profits, and advocating for local and system level transformational changes. Yet, these monumental strides and historical accolades that address significant gaps and inequalities, implement novel solutions, and memorialize the precious lives lost, rarely appear in the academic journals. This special issue of “Patient-led Research and Advocacy Efforts,” contains 12 articles by patient advocacy groups, parent and survivor organizations from Australia, Chile, Ecuador, India, New Zealand, and the United Kingdom. These articles showcase perspectives, methods, and empirical evidence for notable changes when strong partnerships are built across the cancer treatment trajectory beginning with diagnosis. In addition, this special issue emphasizes the crucial role children, and their families play in helping to co-produce and mobilize knowledge to deal with the grim reality of childhood cancer. Without significant changes, the majority of children will continue to die and experience significant strains on their families, resulting in lost potential, reduced equality, and economic hardship. By illuminating the growing influence of patient representatives and patient groups on research methods, advocacy, and policy, we hope to encourage the childhood cancer community to further explore, partner and foster that influence. In most cases, patients and their caregivers are better at understanding their disease and lifestyle needs than most medical professionals. They also have important ideas about what research would be most beneficial to their lives, special to improve their daily quality of life. They are in the perfect position to identify research questions, offer novel solutions, take action, and advocate for knowledge mobilization. When it comes to involvement in research, Patient Advocacy Groups (PAGs) along with a parent and survivor support groups are increasingly vital (Figure 2). PAGs focus increasingly on driving quality care and achieving patientcentricity. A cancer diagnosis, followed by the initiation of treatment, can pose many challenges for the child and family, and they may experience feelings of shock, grief, and many unknowns. The abandonment of a child's treatment may be due to multiple factors at this time. Efforts are underway in India to introduce multimodal interventions to dramatically reduce treatment abandonment. In the absence of an official tracking system, Arora et al. describes the use and acceptability of a custom-made tool in the form of the “You are not alone” book to be used by parent group members as patient navigators to track each child's progress in the initial stages of their treatment. A key component of implementation was the partnership with CanKids; a non-for-profit organization that provides significant social support; Figure 1). For their approach, missing a scheduled hospital appointment was not the trigger for contacting families, but weekly contact is essential from the start of treatment. The weekly contact may be a promising intervention in our collective efforts to reduce the treatment abandonment of childhood cancer. In the aftermath of the passing of Leila Rose at 22-months, her parents, Dr Andrew and Tracy Chow, wondered how many other families suffer due to the loss of a child. Guided by the philosophy of “leaving no stone unturned,” Leila's parents established the Leila Rose Foundation in Australia. As part of the Family Support Coordinator program, the Family Support Coordinator accompanies families to medical appointments and acts as a facilitator and medical jargon interpreter. The Leila Rose Foundation also established a program designed to reduce the financial burden faced by families with a child with cancer. This program provided financial assistance for day-to-day bills, incidental expenses, and a limited number of whole genome analyses, as determined by the treating oncologist. Throughout the world, families are facing significant, catastrophic, and toxic financial pressures, which will affect whether they continue or abandon their DOI: 10.1002/cnr2.1657

In the past, families of children with cancer have also played an important role in advancing cancer treatment, contributing to research, mobilizing resources, establishing non-for-profits, and advocating for local and system level transformational changes. Yet, these monumental strides and historical accolades that address significant gaps and inequalities, implement novel solutions, and memorialize the precious lives lost, rarely appear in the academic journals. This special issue of "Patient-led Research and Advocacy Efforts," contains 12 articles [1][2][3][4][5][6][7][8][9][10][11][12] by patient advocacy groups, parent and survivor organizations from Australia, Chile, Ecuador, India, New Zealand, and the United Kingdom. These articles showcase perspectives, methods, and empirical evidence for notable changes when strong partnerships are built across the cancer treatment trajectory beginning with diagnosis.
In addition, this special issue emphasizes the crucial role children, and their families play in helping to co-produce and mobilize knowledge to deal with the grim reality of childhood cancer. Without significant changes, the majority of children will continue to die and experience significant strains on their families, resulting in lost potential, reduced equality, and economic hardship. 13 By illuminating the growing influence of patient representatives and patient groups on research methods, advocacy, and policy, we hope to encourage the childhood cancer community to further explore, partner and foster that influence. In most cases, patients and their caregivers are better at understanding their disease and lifestyle needs than most medical professionals. They also have important ideas about what research would be most beneficial to their lives, special to improve their daily quality of life. They are in the perfect position to identify research questions, offer novel solutions, take action, and advocate for knowledge mobilization. When it comes to involvement in research, Patient Advocacy Groups (PAGs) along with a parent and survivor support groups are increasingly vital ( Figure 2).
PAGs focus increasingly on driving quality care and achieving patientcentricity.
A cancer diagnosis, followed by the initiation of treatment, can pose many challenges for the child and family, and they may experience feelings of shock, grief, and many unknowns. The abandonment of a child's treatment may be due to multiple factors at this time.
Efforts are underway in India to introduce multimodal interventions to dramatically reduce treatment abandonment. In the absence of an official tracking system, Arora et al. 2 describes the use and acceptability of a custom-made tool in the form of the "You are not alone" book to be used by parent group members as patient navigators to track each child's progress in the initial stages of their treatment. A key component of implementation was the partnership with CanKids; a non-for-profit organization that provides significant social support 2 ; Figure 1). For their approach, missing a scheduled hospital appointment was not the trigger for contacting families, but weekly contact is essential from the start of treatment. 2 The weekly contact may be a promising intervention in our collective efforts to reduce the treatment abandonment of childhood cancer. 14 In the aftermath of the passing of Leila Rose at 22-months, her parents, Dr Andrew and Tracy Chow, wondered how many other families suffer due to the loss of a child. Guided by the philosophy of "leaving no stone unturned," Leila's parents established the Leila Rose Foundation in Australia. 6 As part of the Family Support Coordinator program, the Family Support Coordinator accompanies families to medical appointments and acts as a facilitator and medical jargon interpreter. 6 The Leila Rose Foundation also established a program designed to reduce the financial burden faced by families with a child with cancer. This program provided financial assistance for day-to-day bills, incidental expenses, and a limited number of whole genome analyses, as determined by the treating oncologist. Throughout the world, families are facing significant, catastrophic, and toxic financial child's treatment; investment and participation in research is critical ( Figure 2).
As a child undergoes cancer treatment, their families will face a wide variety of needs. In order to create a support group in India, Rao et al. 11 conducted a survey to identify the unmet needs of parents of children with cancer. Unmet needs were reported in relation to emotional concerns, informational needs, and treatment side effects.
One notable unmet need was related to the provision of play/artbased activities, and academic support for their child. As a result of a cancer diagnosis, attendance at school is disrupted, and in some cases, results in poor academic performance. Daruvala et al. 7 describe how to set up an activity group and a learning center in Bangalore, India, F I G U R E 1 CanKids VISION is the IMPACT it seeks to make. To enable Global Standards of Survival, between 70% and 95%, for childhood cancer in India. To ensure Quality of Life and Care for the child with cancer and his family throughout his cancer journey. To secure-in accordance with UN Convention on the Rights of the Child-Right to Health, Education, Her Childhood, Pain and Palliative Care and the Right to be Heard  Polanco et al. 10 provide a pathway for setting international standards for patient and parent participation in cancer research in children, adolescents, and young adults. Over 50 participants attended the workshop from Europe, including oncologists, nurses, allied health professionals, scientists, representatives from charity organizations, parents, and survivors. There was unanimous support for a standardized and collaborative European strategy for patient and parent involvement in pediatric oncology research.
There are well-established and long-standing models in the UK, The Netherlands, and France, but there is considerable disparity in survival rates across Europe. In order to bridge this gap, resources must be available to raise awareness, cultivate, and foster patient and parent engagement and involvement with research. In their article Rafael et al. 1  The report is intended to result in increased patient and family engagement, as well as patient organizations publishing their research and collaborating more with scientists, researchers and health care professionals in order to do so. The future looks bright (Figures 3 and 4).

ACKNOWLEDGMENTS
We wish to thank Nidhi Bansal, PhD, Funding Editor of Cancer Reports, for her support, input and collaboration. Argerie Tsimicalis, RN, PhD, is the recipient of a Junior 1 Research Scholar Award from the "Fonds de recherche du Québec-Santé".

CONFLICT OF INTEREST
We all declare that we have no conflicts of interest.

ETHICS STATEMENT
This editorial did not involve human participants; hence, the editorial was not subject to an ethical review and approval process.