Challenges of Developing Patient-Led Research
Patient-led research offers patients and families great hope of relatable studies, and findings that can significantly improve care and outcomes, there are challenges, as with most new ventures.
Research Costs
The costs of patient-led research can be substantial. For example, this approach involves:
- Significant human resources.
- Additional intensive training for patient-participants.
- Collaborative group meetings associated with developing and conducting research.
- Compensation for patient participants when meetings occur during normal work or school hours.
- Dissemination of knowledge.
Some elements, such as researcher salaries, are often not covered by research grants.
Limited Financial Support
There is not enough funding to support all the research projects that seek funding, and rare retinoblastoma competes with more common childhood diseases. Traditional funding bodies are also less likely to fund innovative methods that break the mould or that their reviewers are unfamiliar with, and patient-led research may not fit strict application criteria.
Combined, these challenges create a very tough funding environment for patient-led research.
Building Knowledge
Patients and families are experts in their experiences but often need training and guidance in research methodologies. Similarly, researchers often need to incorporate training and adaptation to ensure inclusive, accessible approaches for participants with sight loss.
Creating accessible educational resources, support systems, and research processes is vital to empower everyone as meaningful contributors to the research process. This can take time, and increases the human, material, and financial costs of the research.
Changing the Culture
Integrating patient-led research into the traditional academic and clinical research arena can meet resistance, suspicion, and apathy. The process requires a shift in perspective, valuing lived experience and scientific expertise equally, and fostering a research environment where every voice is welcome, heard, and respected.
Ethics and Privacy
Ethical considerations, including consent and confidentiality, are paramount. Navigating these issues with care ensures that patient-led research yields valuable insights and upholds the highest standards of respect and protection for all participants.
Demonstrating Impact
Demonstrating the real-world impact of patient-led research is vital for its growth and sustainability as a valued research method. This means conducting meaningful studies and finding effective ways to integrate the findings into clinical practice and policy.
Each phase of research can be a long process, so the establishment of patient-led research as a standard methodology may take many years.
From Research to Reality
Translating research insights into tangible improvements in care can be a slow process. While patient-led research continues to become established as a standard approach, its valid findings are still dismissed as unreliable or irrelevant, more readily than traditional forms of research.
A concerted effort is needed from patients, families, researchers, healthcare professionals, and policymakers to ensure the research is clearly understood, respected, and leads to actionable change.
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Despite these hurdles, patient-led research promises immense opportunity to enhance retinoblastoma care throughout life. By facing these challenges with a spirit of collaboration and a commitment to inclusion, we can advance a research approach that is truly by the community, for the community.
Patient Engagement in LMICs
Patient engagement in research in low- and middle-income countries (LMICs) faces significant and unique challenges. These include:
- Gaps in health infrastructure, which limit access to care and thus the feasibility of engaging patients in research.
- Low socioeconomic status, which means patients’ are less able to participate due to related costs.
- Cultural stigma surrounding childhood cancer and eye removal surgery, which may deter patients from openly engaging in research.
- Uncertain roles, where patients and their potential research contributions are not clearly defined or understood.
All these barriers can severely restrict the patient family involvement in research, hindering the development of relevant and impactful studies.
Overcoming Challenges
Many approaches that can help overcome the challenges in LMICs can also benefit our global retinoblastoma community. For example:
- Building strategic national and international research partnerships like the Kenya National Rb Strategy can provide support and resources for identified needs.
- Initiatives that reduce cultural stigma and educate communities about the importance of patient involvement in research have multiple benefits for patient families and the research process.
- Providing holistic training and education for all stakeholders can help clarify the roles and benefits of patient engagement, increasing everyone’s confidence and calm.
- Mobilizing patient champions and peer-to-peer support networks can foster a more inclusive research environment.
These approaches can form a supportive infrastructure that empowers patient families to take an active, meaningful role in research, no matter where they live in the word. Collaborating with scientists, they can enhance relevance and impact of research findings, and ultimately improve patient care and outcomes.
From Participant to Pioneer
WE C Hope encourages everyone in our global retinoblastoma community to join the growing movement that places patients, survivors, and families at the forefront of research. By harnessing our collective insights and experiences, patient-led research paves the way for scientifically sound advancements that deeply resonate with the needs and hopes of all they aim to serve.
The One Retinoblastoma World meeting brings together patient families, survivors, scientists, clinicians and others to advance care together. We explore recent research progress, discuss priorities in diagnosis, Rb management, psychosocial support and lifelong care, collaborate on real-world solutions to big challenges, and learn about different aspects of the research process together.
One Rb World harnesses the collective power of our experience, expertise, energy, and determination to forge a brighter future for our global community. Collaboration transforms each person from participant to pioneer, helping to move patient-led research forward from innovative concept to respected, integrated practice yielding major benefits to patients and families.
During One Rb World 2021, survivors, parents, and scientists explored the role of ethnographic research in retinoblastoma, including the potential benefits and challenges of this often overlooked approach to advancing cancer care.
Learn more about Ethnography Research.
