Patient organizations serve as advocates for patients’ needs and preferences, ensuring that these factors are considered in decision making processes. These organizations play an essential role in supporting patients throughout their care journey via their patient initiatives and they serve as a crucial bridge between the patient community and other stakeholders, such as researchers, the life science industry, healthcare providers, and policymakers. The insights and expertise that patient organizations represent on behalf of their communities’ lived experience contribute to the development of patient-centered care models, improved treatment outcomes, and the overall advancement of the clinical industry.

By gaining a deep understanding of patient and caregiver perspectives within the framework of their individual experiences, organizations can assume a pivotal role in advocating for and effectively conveying the significance of incorporating patient voices to other community stakeholders, including the industry and research community. Additionally, delivering key insights for patient organization-led initiatives, priorities, and programs. This approach of collecting lived experience insights not only fosters patient and caregiver engagement by providing ongoing received value and ensuring their continued involvement with the organization but also drives patient-centered treatment developments.

However, it’s essential that patient organizations consider adjusting their approaches and initiatives to best meet patients and caregivers where they are, by taking into account barriers and motivators for engaging in research, to achieve meaningful engagement, improve outcomes, and support those affected.

Achieving meaningful engagement with patients and caregivers

While there are existing barriers to engagement, such as limited access to clinical trials, lack of trial awareness and education, navigating challenges in donating patient health data, cultural and technological literacy gaps, mistrust of the health system, discomfort with medical information, and socio-economic circumstances, there are also numerous motivating factors to consider. Individuals with lived experiences are motivated to participate in research and share personal medical data for various reasons. By providing value to patients that effectively address key motivators, organizations will increase consistent engagement with their organization, data sharing, and clinical care, which will lead to expanded reach.

Insights for overcoming barriers to clinical research engagement

As patient organizations develop initiatives to address known barriers and improve patient engagement in clinical research, it is important to learn about the unique concerns of the patients and caregivers to provide the relevant information to address their needs. This outreach should be coupled with a dedicated focus on the compilation of information resources about how the organization can reduce any given burden and all the factors that may come into play pre- and post-participation.

To address cultural and educational barriers, it is crucial for patient organizations to engage in open discussions with patients and caregivers as they are navigating their care journey and decision making. This highlights the opportunity for patient organizations to prioritize patient support services. Understanding and acknowledging these concerns is a critical first step towards developing initiatives that advocate for patients and caregivers. By recognizing these barriers, patient organizations can work towards exploring motivating factors that will guide the next phase of engagement and act as champions for patients and caregivers in external initiatives.

Taking advantage of motivating factors

There are a variety of opportunities for patient organizations to empower patients and facilitate a more streamlined experience that will promote motivating factors. These include reducing the duplication of collection efforts, ensuring researchers obtain resilience factors when collecting the patient story, and relaying the impact of patient contributions to treatment developments. Patient organizations can achieve this through patient data initiatives that are collaborative and by providing patients with resources to help them navigate their encounters with providers — ensuring there are no gaps in their disease or disorder history and communication approaches to best advocate for themselves.

How technology supports engagement initiatives

Incorporating technology into patient care and engagement strategies is an essential aspect of improving outcomes and accessibility. It enables productive patient interaction, can reduce the burdens patients and caregivers face, and positively impacts patient care by enhancing ease of access. However, it is crucial to recognize that there is no one-size-fits-all solution, and technology must align with constituent preferences while remaining accessible and easy to navigate.

While technology can automate processes and alleviate burdens for patients, caregivers, and organizations, it should complement rather than replace the power of human interaction with the patient organization. It serves as a tool to support and enhance the care experience. By leveraging technology, patient organizations can provide streamlined education resources, automate the maintenance of up-to-date health records, and create more opportunities for patient and caregiver engagement at various times and touchpoints that best meet their needs.

Technology can facilitate the development of online communities where patients can connect, learn from one another, and engage in meaningful ways. These virtual communities foster a sense of belonging and empower patients to participate beyond their initial diagnosis and treatment. By leveraging the collective knowledge and experiences of others within the community, patients can gain valuable insights and support.

Patient organizations play a vital role in creating and facilitating digital platforms for their community, guiding patients through the digital platforms, addressing concerns, and ensuring that patients feel supported throughout their journey. The combination of human interaction and technological advancements creates a comprehensive approach that enhances patient care and engagement, all while providing value to the patient.

Best practices for achieving meaningful engagement with patients and caregivers

The following are suggested best practices for achieving meaningful engagement.

• Incorporate your constituents into decisions being made for your patients and community and follow up to let them know what came from the efforts.
• Provide meaningful feedback so they know their time, effort, and information was valuable.
• Anticipate the changes that come with life-alerting medication. As chances of living longer increase, there is greater need for support systems for life events (e.g., financial planning and retirement).
• Ensure you strive for fair and uniform care despite location, socio-economic background, ethnicity, scientific knowledge (e.g., access to clinical trials, the best information on the disease, treatments, and support).
• Technology has changed our lives. Incorporate technology into patient care and healthy patient interaction. The potential is huge for positive steps in patient care.
• Engage with authenticity as much as possible.
• Report back to people to communicate how their contributions are part of something bigger that is going do good and make a difference.

Patient organizations have the opportunity to play a pivotal role in advocating for patients to help reduce burden that has hindered engagement in both research and clinical care.

This can include providing meaningful feedback to patients, acknowledging the time, efforts, and information they have shared and demonstrating that their contributions are valued and valuable. Organizations can also provide patient support services that facilitate interaction and enhance communication, access to information, and education that is easy to understand for each patient population. This can include the utilization of knowledge about the patients’ clinical care and disease history, and their key concerns to provide guidance on how to effectively engage in discussions with their providers. Through the development of these educational resources and programs, organizations can enhance patients' understanding of their disease, treatment options, and available support services.

Patient organizations have the ability to serve as a conduit, convener, and collaborator among different stakeholders and the patient communities.

Part of this role is providing feedback on trial results, whenever possible, including trial outcomes, insights, and advancements to patients and caregivers. By sharing this information, they can foster a sense of trust among the community and demonstrate the value of patient engagement with the organization. In addition, they can convene and collaborate with researchers, healthcare providers, and other stakeholders to guarantee patient needs are addressed and integrated into initiatives on both a micro and macro level. However, for organizations to successfully fulfill this role, patients must be involved in the decision-making process and be kept apprised of the progress achieved on their behalf.

In striving for fair and uniform care, despite location, socio-economic background, ethnicity, and scientific knowledge, patient organizations can support efforts to eliminate disparities in access to clinical trials, disease information, treatments, and services. Partly driven by federal regulatory support for the use real-world data, researchers and sponsors increasingly recognize the importance of capturing the comprehensive and representative patient data that registries can provide.

By leveraging technology and their connection to the lived experience community, patient organizations can further facilitate collaboration among stakeholders and position patients as partners in decision-making. Technology capabilities can help reduce burden on both patients and stakeholders that previously hindered joint approaches. For example, organizations that help streamline the data collection process to ensure that patients' efforts in sharing their health data are maximized. By reducing duplication of data collection, organizations can make sure researchers obtain the complete patient story and incorporate both the challenges and resilience factors. Beyond the research settings, technology can help increase accessibility and provide an online community where patients can connect, learn, and engage meaningfully.

Patient organizations can provide crucial services and support to their community that have the potential to make a long-term impact, such as participating in the changes that come with life-altering medications. As patients with chronic illnesses experience improved health and increased life expectancy, they may face new challenges and transitions in various areas of life. Patient organizations can support patients by providing resources and guidance for financial planning, retirement, and reentering the workforce. By proactively addressing these issues, organizations empower patients to navigate life after receiving new therapies and ensure they have the necessary support systems in place.

Conclusion

Patient organizations play a vital role in engaging patients authentically and effectively communicating the valuable outcomes of their contributions to the larger patient community. Addressing barriers and leveraging on factors to engagement will allow organizations to promote patients’ ability to take an active role in research developments and clinical care outcomes. Through the process of engaging with their valued constituency, active listening, continuous collection and review of perspectives and feedback, and creating meaningful communication sharing with these individuals, patient organizations can ensure that their initiatives, programs, and priorities are in line with what’s most pressing for their main constituents and that barriers to engagement are being addressed in doing so.

By valuing patient input, providing support services, and facilitating collaboration, organizations can create an environment that empowers patients, fosters trust, and drives advancements in healthcare. Through their initiatives and inclusive approaches, patient organizations can enhance accessibility, reduce burden, and provide a community for patients that will promote engagement at every stage of their care journey.

If you would like to read more on this subject, the first blog is the series is Barriers and Motivators Impacting Patient Engagement in Research.

And there is a white paper entitled Meeting Your Patient Advocacy Mission: Achieving meaningful engagement with patients and caregivers.