From Awareness to Impact: Making Patient Support Programs Work
Evidence for Change Series: Immunology in Focus
Patient support programs (PSPs) have the potential to transform how people with autoimmune conditions manage their health—offering practical tools, emotional reassurance, and a sense of connection.
Yet despite their benefits, awareness and engagement remain strikingly low. Our research reveals that most patients are unaware these services exist, and even fewer are actively enrolled. For those who do participate, the impact is clear: improved adherence, reduced isolation, and greater confidence navigating treatment.
To close this gap, support must be designed with patients, not just for them. Human-centered, behaviorally informed programs—delivered through trusted channels and tailored to real-life needs—are essential to ensuring support is not only available, but truly accessible and meaningful.
Evidence for Change Series: Immunology in Focus
Patient support programs (PSPs) have the potential to transform how people with autoimmune conditions manage their health—offering practical tools, emotional reassurance, and a sense of connection.
Yet despite their benefits, awareness and engagement remain strikingly low. Our research reveals that most patients are unaware these services exist, and even fewer are actively enrolled. For those who do participate, the impact is clear: improved adherence, reduced isolation, and greater confidence navigating treatment.
To close this gap, support must be designed with patients, not just for them. Human-centered, behaviorally informed programs—delivered through trusted channels and tailored to real-life needs—are essential to ensuring support is not only available, but truly accessible and meaningful.
Optimizing Immunology Patient Support
Our latest research sheds light on how patients with autoimmune conditions experience and engage with support services—and where the gaps still lie. Despite the availability of PSPs, most patients still remain unaware or uninvolved, missing out on tools that could help them manage treatment and navigate daily challenges.
To truly empower patients, support must be designed with behavioral science at its core. Programs that feel human, flexible, and relevant—delivered through trusted channels and tailored to real-life needs—can improve adherence, reduce isolation, and foster resilience. By embedding behavioral science and health psychology into the design of immunology PSPs, we can create digital and human-led support that meets patients where they are. Optimizing immunology patient support programs this way will enable and empower those living with autoimmune conditions to Change for Good
To learn more about how to increase awareness of your patient support offerings and ensure they resonate with the real needs of patients, contact Dr Kate Perry—our Global Head of Behavioral Science and Lead Researcher—for a 30-minute online discussion:
Click Here to contact Kate and request a meeting and receive a free copy of our study report.
We can help you evaluate your current approach, identify gaps, and co-create solutions that drive meaningful engagement and improve patient outcomes.
Read about our expertise & behavioral science insights.
Introduction
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At Atlantis Health, we’re committed to helping patients take an active role in managing their health. A key part of this is ensuring that patient perspectives shape our thinking—from the questions we ask to the solutions we design.
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As part of our Evidence for Change Research Series, we explored the lived experiences of 152 people with autoimmune conditions across the globe to better understand the challenges they face and how support could be made more relevant and effective.
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This study followed a mixed-methods, observational approach, combining newly validated psychological measures with open-text responses to capture both quantifiable patterns and rich, real-world insights.
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You can explore the full methodology and learn more about who took part here.
Supporting Adherence in Autoimmune Conditions
Staying on treatment can be a challenge for many people living with autoimmune conditions. Although the reasons for nonadherence are diverse, side effects, fluctuating symptoms, and the realities of daily life get in the way for many patients.
In our research, 82.3% of participants reported some degree of nonadherence to their prescribed treatments—underscoring the need for better support.
Supporting adherence goes beyond providing information. It includes practical tools, emotional encouragement, and personalized guidance—whether offered by pharmaceutical companies, NGOs, or other organizations. Yet, most people aren’t connected to these resources. Many are unaware they exist.
Low Awareness and Involvement With Support Services
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Most people living with autoimmune conditions are not connected to any form of structured support.
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Only 16% of participants reported current or past involvement with a patient organization, and nearly half (45%) were unaware that such groups even existed.
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Awareness of additional support services offered by pharmaceutical companies—such as nurse calls, educational materials, or reminder tools—was even lower. Only 16% of respondents were aware of these offerings, with the vast majority (84%) unaware that such support existed.
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When it comes to patient support programs (PSPs), specifically, enrolment was minimal. Only 10% of participants had ever been enrolled in a PSP, and just 5% were currently receiving support.
Patient Reported Reasons for Lack of Involvement
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Among those who were aware of support programs but chose not to engage, several key barriers emerged. Half of these individuals felt that they simply did not need the support. Others cited lack of time, limited interest, or a perception that the programs felt too robotic and impersonal.
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Interestingly, the finding that many felt they didn’t need support contrasts with other survey responses, which indicate that patients are seeking practical and emotional assistance to effectively self-manage. This suggests a potential disconnect: individuals may underestimate their own support needs, possibly because they are unaware of what is available or because the benefits of these programs are not clearly communicated.
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Overall, these findings suggest that for support initiatives to be more effective, they must not only be better publicized but also designed to feel more human, flexible, and relevant to the diverse needs of patients.
Patient Reported Benefits of Patient Support
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For those who did engage with support programs, the benefits they experienced were wide-ranging and deeply meaningful.
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Participants reported practical assistance such as medication reminders, sharps container delivery, and help with managing copay costs.
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Emotional and psychological support was also a major theme, with many describing how programs helped them feel less alone, more informed, and more hopeful.
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Access to nurse helplines, educational resources, and community forums provided reassurance and guidance, especially during the early stages of diagnosis. Participants also highlighted the value of program features that offered hands-on support with navigating healthcare systems and managing insurance-related issues.
Implications for Patient Support Programs
These insights highlight the potential of well-designed support programs to make a tangible difference in the lives of people with autoimmune conditions—both practically and emotionally.
These findings highlight a clear disconnect between available support services and the people they are intended to help. Given the high prevalence of treatment nonadherence and the day-to-day burden of treatment for many patients, these low levels of awareness represent a missed opportunity to deliver meaningful support.
Improving visibility and access is key. Greater collaboration with healthcare professionals, clearer communication during prescribing and onboarding, simplified enrolment pathways, and tailored outreach through patient organizations and digital channels could all help increase awareness. There’s also a crucial role for co-design—ensuring services are developed with patient input to feel relevant, trusted, and genuinely helpful in the context of real life.