16 May 2025
The case for patient ambassadors: Why they matter and how to integrate them into healthcare
According to the NHS, a patient ambassador is an individual who promotes health research by sharing their personal experiences to support and empower other patients, ensuring they are aware of opportunities to participate in clinical trials and receive the best standard of care. (1) Ambassadors are typically patients themselves—they may be undergoing treatment or in remission—who are able to take on responsibilities beyond their diagnosis, or a family member or caregiver of a person living with disease. Regardless, these individuals know the condition well, and understand the lived experiences associated with it. Although ambassadors raise awareness of clinical research in a disease area, they may take on various roles, from encouraging patients to discuss their needs and concerns to educating them about health issues or building a community. Nevertheless, these responsibilities require compassion and human-centred care: they deliver emotional support, encouragement, and guidance to other patients in need of a support system. (2)
Patient ambassador roles are increasing in prevalence due to greater awareness and appreciation of these individuals and wider patient engagement initiatives in recent years. Many real-world examples of established ambassador programmes exist across various therapy areas and global regions. The European Patient Ambassador Programme (EPAP), developed by the European Lung Foundation (ELF), is a standout initiative that helps patients and carers learn how to successfully advocate for themselves and others living with chronic conditions. It is an online self-learning programme comprising eight modules, each with a separate certificate of completion. The resources are available in numerous languages to ensure equitable access and the involvement of diverse representatives. (3) This programme demonstrates the value of accessible education in transforming patients into ambassadors, empowering them with the confidence to navigate the healthcare system and represent the voices of their communities.
Why they matter
By collecting patient-reported outcomes, Nørskov and colleagues (2021) identified a positive association between patient ambassadors and a range of health outcomes in newly diagnosed acute leukaemia patients. Patients who were assigned an ambassador revealed significant improvements in anxiety, global health, performing daily activities, cognitive functioning, functional wellbeing, and patient involvement in their care after 12 weeks of support. Beyond the patients themselves, one-to-one peer support was well received among patient ambassadors, resulting in high satisfaction in both groups: patients felt understood and more hopeful, while ambassadors achieved a sense of purpose and gratitude. This study highlights the value of ambassador programmes in supporting patients’ overall wellbeing, particularly immediately following diagnosis, when they may feel most overwhelmed. (4)
Previous research has also demonstrated a positive impact of patient support programmes on treatment adherence and discontinuation rates. In a cohort of patients receiving adalimumab (a treatment that reduces inflammation in the body) for various conditions (Chron’s disease and rheumatoid arthritis, among others), those who participated in a patient support programme showed almost a 30% higher adherence to medicine intake and a 22% lower discontinuation rate compared to those managing their treatment independently. Although this study involved nurse ambassadors rather than patient ambassadors, these findings indicate the potential of ambassador programmes to ease the complexity of treatment plans. (5)
Moreover, a 2018 panel discussion held by the European Neuromuscular Centre, a foundation of patient organisations, acknowledged that offering support and mentoring to young patients with Duchenne muscular dystrophy and their parents and caregivers is critical to enhancing their self-esteem and confidence. This group of stakeholders called for the involvement of individual patients and patient organisations to co-develop ambassador programmes to address educational needs and support others. This discussion emphasised the value of implementing patient support programmes at a young age to instil positive habits and behaviours that follow into adulthood and empower individuals with knowledge early on. (6)
Acknowledging the challenges to patient ambassador integration
Despite the evidence-based value of patient ambassadors, practical limitations may hinder the feasibility of integrating these programmes into healthcare. While patient ambassadors understand the reality of living with their condition, we must acknowledge that they are not medical professionals. Patient ambassadors must, therefore, participate in educational programmes and receive ongoing mentoring to deliver high-quality, meaningful support to others. Training materials may cover the latest research guidelines, ethical considerations when interacting with patients, or tools for self-managing disease, which take time to develop and are resource-intensive. (7,8)
Other research has highlighted the challenges in recruiting highly motivated patient ambassadors due to increased burdens, as well as difficulties in specific routes of patient-ambassador contact. (4,9) For example, geographical location and poor health status can restrict in-person meet-ups, meaning phone calls or messaging services must be used. (4) Additionally, on an emotional level, patient ambassadors may require support themselves, such as assistance in coping with the death of the patient. (4)
Since patients are the ones who truly understand the lived experience of disease, patient ambassador programmes offer the potential to revolutionise healthcare into a more humanistic experience. To overcome the barriers of patient ambassador programmes, we must raise awareness of the importance of structured peer support to inspire hope, deliver patient-centred support, and ensure the highest standard of care for those in need.
At Synthesis, we recognise that successful patient ambassador programmes require collaboration between diverse stakeholders, including patient organisations and advocacy groups. That is why we are committed to fostering strong partnerships within the industry, connecting patients with pharma. Contact us at info@synthesishealth.co.uk to learn how our specialist writers can help amplify your patient ambassador initiatives. Together, we can empower those living with disease with the tools they need to navigate the healthcare system and offer emotional support through a sense of community.
References
https://www.analcancerfoundation.org/fundraise/patient-ambassadors/
https://europeanlung.org/en/get-involved/european-patient-ambassador-programme-epap/
Nørskov KH, Overgaard D, Boesen J, et al. Patient ambassador support in newly diagnosed patients with acute leukemia during treatment: a feasibility study. Support Care Cancer. 2021;29(6):3077-3089. doi:10.1007/s00520-020-05819-w
Brixner D, Rubin DT, Mease P, et al. Patient Support Program Increased Medication Adherence with Lower Total Health Care Costs Despite Increased Drug Spending. J Manag Care Spec Pharm. 2019;25(7):770-779. doi:10.18553/jmcp.2019.18443
Ambrosini A, Quinlivan R, Sansone VA, et al. "Be an ambassador for change that you would like to see": a call to action to all stakeholders for co-creation in healthcare and medical research to improve quality of life of people with a neuromuscular disease. Orphanet J Rare Dis. 2019;14(1):126. Published 2019 Jun 7. doi:10.1186/s13023-019-1103-8
Mayo-Gamble TL, Murry VM, Cunningham-Erves J, et al. Engaging Individuals with Sickle Cell Disease in Patient-Centered Outcomes Research: A Community Health Ambassador Training Model. J Health Care Poor Underserved. 2020;31(1):353-369. doi:10.1353/hpu.2020.0027
Lofters AK, Vahabi M, Prakash V, et al. Lay health educators within primary care practices to improve cancer screening uptake for South Asian patients: challenges in quality improvement. Patient Prefer Adherence. 2017;11:495-503. Published 2017 Mar 8. doi:10.2147/PPA.S127147
Wen MJ, Salihu EY, Yang C, Maurer M, Shiyanbola OO. Peer Ambassador Perspectives in a Culturally Tailored Self-Management Intervention for African Americans with Type 2 Diabetes: A Qualitative Study. Pharmacy (Basel). 2024;12(3):75. Published 2024 May 8. doi:10.3390/pharmacy12030075