Monday August 14, 2023
Multicentre research is complex. Challenges can arise in the process of bringing its many benefits to patients, families and professionals. In part 2/2 of this article, Rb survivor and WE C Hope CEO, Abby White, explores common challenges, with solutions for each, and how our childhood cancer community encourages healthy, successful collaborations.
Parents, survivors, medical professionals, and researchers work together at One Rb World 2017 in Washington D.C.
For children with retinoblastoma and survivors navigating its lifelong consequences, deciding the best screening, treatment. Follow-Up, and supportive care can be the difference between life and death, saving some sight or none, good quality of life or long-lasting deep trauma. Research gives us all the evidence to decide what is best.
Patient involvement in research is now an almost universal prerequisite for funding and Human Research Ethics Committees (HRECs). Parents and survivors within the retinoblastoma community are becoming more involved in guiding research questions and design, and other areas of research advocacy.
As we do, it becomes more important that we understand the research process, and the things that help the best research to thrive. We can then make the most informed choices about how we engage with and support the research needed to improve care for ourselves, our loved ones, and future children with eye cancer.
This two-part blog explores multicentre collaboration for retinoblastoma research.
Part 1 examines why it is needed, what it is, 12 ways it improves research, and 8 key areas in which it can positively change patient care.
Part 2 (below) focuses on the common challenges of multicentre research, with solutions for each. We also explore how the childhood cancer community encourages healthy, successful collaborations. Key note: this involves parents and survivors!
Challenges to Multicentre Research Collaboration
All types of multicentre collaboration are complex. Challenges can arise in the process of bringing their many benefits to patients, families and professionals. But each challenge also comes with practical solutions when people are willing and able to work together.
The committed team will look for potential obstacles before they arise, and find ways to avoid them or reduce their impact at every stage of the partnership. Addressing potential challenges requires specific funding and other resources, but doing so with advance planning is far less costly and effective for overall success than reacting to challenges when they arise.
Below, we explore the most common and significant tests to successful multicentre collaboration, and potential solutions for each. We also look at what can help collaborators identify and manage challenges before they arise.
Geographic distances, time zones, and language barriers can hamper effective teamwork between multiple centres.
- Establish regular communication channels, like virtual meetings and teleconferences. Select times that work for each time-zone, and if a universally suitable time is not possible, plan to rotate meeting times to avoid the same centre being repeatedly marginalized.
- Use project management tools everyone can engage with to assign tasks and track progress, and secure online platforms designed for real-time collaboration. These platforms support both the collaboration and the human connection that underpins it.
- Encourage a culture of open communication to nurture active participation and engagement from all partners. Regular relaxed meetings or “water cooler” breaks during formal meetings help to build up the human investment in one another that is often lacking when teams are primarily virtual.
Unequal participation and distribution of responsibilities leads to delays in decision-making, erratic momentum, strain on the coordinating team or individual, and ultimately low engagement and morale that worsens the spiral.
- Promote a sense of shared ownership among all participants by involving everyone in the collaboration’s development. Find out what each person understands about it, what they feel they can bring to the team and project, what they hope to achieve for retinoblastoma, and what they need to be successful in their identified role.
- Establish clear roles and responsibilities and communication channels, and provide appropriate resources and support.
- Share regular updates to the whole group, and recognize individual and team contributions so all participants feel valued.
- Actively address barriers you see or predict, or participant concerns that may prevent equal participation or enthusiasm to participate.
Each collaboration involves navigating complex ethical and regulatory frameworks at each participating centre, such as patient privacy, informed consent, and institutional review board (IRB) approvals. These frameworks may vary from one centre to another.
- A model framework for collaborations may include practical guidance for navigating ethical and regulatory issues. Professional organizations or research institutions may provide such a tool.
- Create your own collaboration-wide checklists to ensure compliance with relevant institutional approvals, data protection laws and other regulations.
- Maintain clear communication and documentation of ethical considerations throughout the collaboration.
Most collaborations for retinoblastoma care and research require significant resources, including infrastructure, equipment, personnel, and research funding. Allocating resources fairly among participating centres can be a challenge.
- Seek funding from diverse sources, such as charitable and philanthropic organizations, government grants, and industry partnerships.
- Develop a clear resource allocation strategy that considers the active participation, capabilities, and needs of each centre, and the ultimate translation of research to patient care.
- Collaborate with centres in different socioeconomic regions to maximise the reach and impact of available resources for children, families, survivors, and professional colleagues around the world.
Cultural and language barriers can impede clear communication, hinder understanding of diverse cultural practices, and create misunderstandings that affect patient care and research outcomes. Differences in cultural norms, beliefs, and expectations lead to variations in care and research practices that may complicate standardization across the participating centres.
- Foster a culture of open communication and respect for diverse perspectives to promote understanding and empathy. Encourage all team members to share their cultural backgrounds, beliefs, and practices, and to ask one another questions that build knowledge.
- Identify potential language barriers and support needs at the start, and throughout the partnership.
- Use professional translation services and interpreters to ensure accurate communication among team members. Hiring independent language professionals avoids overburdening clinical or research professionals with this time-consuming responsibility.
- As collaborations become more frequent and diverse, it may be valuable to develop cultural competency training that meets the unique experience of retinoblastoma-focused partnerships. Such training will enhance everyone’s ability to navigate diverse cultural contexts, be inclusive, and collaborate effectively.
Without adequate training, personnel may have limited knowledge and skills to effectively participate in the collaboration, leading to inconsistencies and poor project outcomes. Insufficient support can leave staff feeling overwhelmed and alone, unengaged in the collaboration, and unmotivated to work on the project.
- When establishing roles and responsibilities, work with staff to identify all relevant training needs early, and develop a comprehensive training program that covers all identified topics.
- Offer ongoing support through mentoring, regular feedback sessions, and access to resources and expertise.
- Establish a culture of continuous learning and professional development by organizing workshops, webinars, and conferences, within and between collaborating centres. Wherever possible, help staff to attend relevant external learning events.
- Allocate some human and material resources to provide timely support and address issues or concerns when they arise. Fewer small issues will become challenges when there is a named person who is supported in their troubleshooting role, a little regular time, and a friendly open door for staff to address them early.
A consistent team significantly impacts the collaboration. The departure of key personnel can disrupt morale, established workflows, knowledge transfer, and institutional memory. The loss of dedicated individuals can lead to project delays, loss of expertise, and a loss of continuity in patient care. Depending on the person’s role in the collaboration, communication and coordination within and between participating teams may also be impacted.
- Establish comprehensive documentation processes to capture critical knowledge, information and procedures. This can ensure smooth transitions when personnel changes occur.
- Provide robust induction programs to quickly bring new staff up to speed on the collaboration’s goals, guidelines, and workflows.
- Foster a cooperative, mentoring culture that encourages all team members to thrive.
- Offer regular team meetings and virtual platforms that encourage individuals to share their experiences perspectives, and strengthen relationships.
- Advocate policy change to keep highly skilled staff in key roles, where they might otherwise be moved to a different department or hospital with little warning.
- Establish succession plans and designate backup personnel for key roles to minimize disruption in the event of unexpected changes.
Each centre may have its own data management systems, making it difficult to share and integrate data effectively.
- Implement data sharing agreements, and establish a standardised data collection protocol to ensure consistent data capture across participating centres.
- Ensure the infrastructure supports efficient, secure data exchange. This will be best achieved by adopting a common database specifically designed for retinoblastoma management and research.
Medical procedures, treatment regimens and protocols, research methodologies, and other processes vary around the world, creating inconsistencies and difficulties in comparing data.
Establish a common set of guidelines for the collaboration that all participating centres and individual participants agree to. Involve everyone in developing consensus, and regularly review and update the document to ensure it reflects the latest evidence and experience, and aligns with the staff skills, resources and patient needs across the collaboration.
As individuals, we tend to subjectively interpret information in a way that aligns with our pre-existing beliefs or expectations. This kind of bias can lead to participants and teams interpreting data, research findings, or patient symptoms differently, which can hinder effective collaboration and decision-making.
- Encourage interdisciplinary discussions and peer reviews to help identify and challenge biased interpretations.
- Develop and implement consensus guidelines to provide a common framework for interpretation and reduce the influence of individual biases.
- Promote transparent data analysis and reporting to help validate results, minimize interpretation bias, and produce more objective conclusions.
- Include collaborators from diverse backgrounds and perspectives to form a range of viewpoints and more comprehensive, balanced interpretation of data.
- Encourage critical thinking skills and self-reflection among all team members to help individuals recognize and mitigate their own biases.
Collaborators may share intellectual property and publication rights, or designate a team or individual to act on their behalf. The process can create conflicts and delays in disseminating research findings.
- Establish clear agreements and guidelines about intellectual property, data ownership, and publication rights at the very start of the collaboration.
- Consider forming a publication steering committee to oversee processes related to publication, and ensure the interests of all contributors are fairly represented.
- Reward teams and participants who share their data and other contributions in a timely manner. Everyone is different – a small creative thank-you that speaks to the individual can help build a culture of mutual respect and cooperation.
This giant game of Connect 4 was popular at the Southern California Rb Family Day in November 2022. Families and survivors who joined the event had many questions that retinoblastoma research can help to answer, and are keen to have a voice in the research process.
Collaboration requires strong leadership, effective governance, and a shared commitment to the very best patient care. Multicentre partnerships can form, thrive, and change more lives faster when the broad arena in which we all move nurtures an environment of mutual support and teamwork.
Dedicated networks and consortiums bring together clinicians, researchers, parent and survivor advocates to identify research priorities and collaborate on various projects. Networked research communities seek practical solutions to data collection and sharing, and efficient use of limited resources, and advocate their use. They also provide a forum for general discussion and support regarding collaborations.
Organizations like the Children’s Oncology Group (COG), International Society of Ocular Oncology (ISOO), and the International Society of Paediatric Oncology (SIOP) provide a platform for national, regional, and global collaboration. Through conferences, workshops, and working groups, experts from diverse specialties and backgrounds can share knowledge and perspective, and form a vast range of partnerships. They can help build capacity in patient care and research, develop consensus guidelines for care, advocate policy change to improve patient care, and support research projects.
Multicentre collaboration has been well-established for many years within paediatric oncology due to the work of these organizations. However, opportunities were slow to reach our retinoblastoma community, where care is led by ophthalmology, not oncology. This is rapidly changing – now is an important time for parents and survivors to advocate for collaboration supported by professional organizations.
Retinoblastoma patient advocates bring the patient, survivor, and family perspective to the forefront of research. We can advocate for:
- Patient-focused research priorities, including lifelong care;
- Increased collaboration to support quality data collection and sharing; and
- Inclusive, accessible study design that considers our community’s needs.
Collaborative research can bring real-world change to patient care for most children and survivors. The most insightful and effective collaborations develop in partnership with advocates who live with the daily effects of retinoblastoma.
Frequent open meetings, conferences, webinars, journal clubs, and other discussion platforms encourage conversation between all stakeholders in retinoblastoma care. Meetings like One Retinoblastoma World build knowledge, understanding and partnership between researchers, clinicians, families, and survivors, and help to develop relevant, inclusive projects that address urgent questions and needs.
Research networks and professional organizations may develop best practice frameworks to help teams establish and maintain a multicentre collaboration. A framework may include guidelines for communication, data collection and sharing, harmonizing practices, coordinating research, training, and managing resources.
Planning a collaboration can be a daunting prospect. Adapting a model framework together as a multicentre team ensures all key features of the collaboration are covered, while promoting accountability, equal participation, and ethical standards.
Pooling data is the fastest way to enable collaborative research, comprehensive retinoblastoma analyses, and insight. But hospital data systems vary widely, and most are poorly equipped to manage the unique features of this cancer.
Effective collaboration demands a data management tool designed specifically to handle the challenges of retinoblastoma. Global availability and wide use of such a tool will allow collaborating teams to share consistent patient information and research data. Consistent data combined with larger sample size will provide the strongest research evidence to guide patient care.
Training programs, workshops, and other educational opportunities build skills, confidence, and knowledge among healthcare professionals and advocates interested in retinoblastoma care and research. This strengthens the network; helps to identify potential new collaborators and leaders, particularly in under-addressed areas such as community eye health, psychosocial support, and survivorship care; and fosters an open, inclusive culture.
Large project funders like to know their resources are being effectively and fairly used, producing the greatest benefit to patients. Multicentre collaborations that maximize resources and involve patient advocates are more attractive to donors.
While adequate financial support is vital to ensure a healthy, sustainable collaboration and implementation of its projects, the increased funding potential can be a strong incentive for teams to develop a positive working relationship.
New technologies offer growing opportunities to improve data collection, sharing, analysis, and decision-making. They can aid the complex process of integrating data from multiple centres, identify patterns fast, and guide collaborators to important insights that may otherwise take months or years of costly research to establish. They enhance communication and facilitate real-time virtual collaboration –cornerstones of the most effective multicentre collaborations.
Embracing tech innovations that support collaboration, and advocating their swift integration into patient care and research systems are vital to overcome the rarity of retinoblastoma. We need open discussion involving all stakeholders and experts in the field to address ethical, privacy, and security concerns and other questions, and support the safe use of AI to foster effective collaborations for retinoblastoma.
Multicentre research collaborations hold huge potential to advance our knowledge and understanding of retinoblastoma, save more lives and improve care for all, for life. While collaborators can encounter many challenges, the benefits they bring to children, families and survivors are immense. We encourage all healthcare professionals, scientists, institutions, parents, and survivors to support and participate in multicentre collaborations to improve the patient experience.
If you would like to join a global community of clinicians, researchers, parents and survivors sharing knowledge and experience, and exploring priority subjects, we welcome you to One Retinoblastoma World, October 15-17 2024 in Honolulu, Hawaii. Community, conversation and collaboration for optimal care.
Visit our One Rb World 2024 Registration Portal to find all you need to know about the event, get your tickets, and book your group rate hotel room. We do hope very much to see you in Hawaii!
Sponsorship and partner opportunities are available for businesses, foundations and individuals. If you are interested in partnering with us to help host this important forum for global collaboration to improve patient care and cure, please email Marissa Gonzalez at marissa(at)wechope.org.
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About the Author
Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.
Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries. After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.
Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.