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What are the benefits of patient engagement for society?

Anna Saggerson

Updated: Oct 30, 2024

Over the last half century, patients have gained increased autonomy as medicine has moved from a paternalistic model to one which is more patient centred[1,2]. The widespread availability of health information via the internet now means people living with health conditions, especially those with rare diseases, often know more about their illness than their doctor. This shift in dynamics is echoed in wider society as we demand more access to health information and the traditional boundaries between ‘ordinary’ people and their healthcare systems are challenged and redefined.

 

Positively, pharmaceutical medicines development is now more commonly implementing the experiences and insights of people living with disease across all stages – from research prioritisation, target product profile development and trial design and recruitment, to access/reimbursement and post- approval. This ‘patient engagement’ helps to ensure that patient voices are heard throughout the drug development process, driving innovations that are more aligned with the needs and values of the communities they serve. However, in reality this is not being done systematically, compromising the value offered to society by drug developers.

 

Undoubtedly, the patient voice is the key to unlocking the full potential benefit of the pharmaceutical industry to society.  Here’s four reasons why:

 

1.     Patient experience propels innovation. Patient experts are most motivated to ensure medicines or technology development is relevant and meaningful to their lives. Communities of dedicated advocates are the vanguards for change, championing research or solutions to health issues before they catch Pharma’s attention [3]. Industry should actively encourage and support this patient-led entrepreneurship[4]. Additionally, patient engagement is facilitating the process of innovation itself because it increases clinical trial participant recruitment and retention[5]. By making research and development more relevant and efficient, increased patient engagement not only accelerates access to treatments which truly meet patients’ needs, but also improves patient outcomes, contributing to a healthier, more sustainable society.

 

2.     Representation matters. Lack of diversity in clinical research negatively affects the generalisability of study data and perpetuates health inequalities, having a significant impact on public health. More inclusive clinical trials help address health inequity by broadening access to early investigative medicines, and one economic modelling study suggested that even modest reductions in health disparities as a result of better Black and Hispanic/Latinx representation in clinical trials for diabetes and heart disease would result in billions of dollars of savings for U.S. society[5]. While Pharma has made progress in addressing disparities in clinical trial recruitment, there is still a long way to go. We must take the time and energy to engage and recruit underrepresented people, finding novel solutions to overcome barriers to their engagement so that clinical trial diversity matches the populations that the medicines are designed to treat.

 

3.     Decisions involving patients better reflect real-world needs. Engaging patients as active participants in regulatory processes like health technology assessment is essential. By capturing the value of healthcare technologies from patients’ perspectives, and in a consistent way globally, we can better align reimbursement decisions with actual patient needs, priorities, and contexts[6,7]. More broadly, patient advocacy is a powerful force for driving policy change, again ensuring that patient perspectives are central to decision-making processes, resulting in more effective policies and systems and improved health outcomes as a result.

 

4.     Engagement helps boost health literacy and combat misinformation. Low health literacy is associated with higher rates of hospitalisation, mortality and costs to society.8 It also contributes to damaging health misinformation online, as seen during the COVID-19 pandemic, where health mis- and disinformation on social media had dangerous effects, contributing to vaccine hesitancy and resistance to public health measures, potentially amplifying outbreaks[9].

 Therefore, society would benefit from consistent, proactive provision of accessible, culturally relevant, and community co-created educational resources across all therapeutic areas. Pharma companies are well-positioned to support this, given the wealth of resources available within the industry and arguable ethical duty to ensure ‘customers’ are sufficiently informed about the treatments and conditions within each company’s remit. With ‘stamps of approval’ from public sector bodies and trusted healthcare professionals at the forefront of delivering this information, such intervention could be transformative for boosting the knowledge of the general public if done in a coordinated and systematic way, rather than the ad hoc, siloed manner we often see in the industry.

 

Overall, patients and their advocates play a crucial role in advancing our society into one where healthcare is more impactful, efficient, and equitable. When medicines reflect the diverse needs of the people they are designed to treat, and the system validates lived experiences as much as it supports the innovation those experiences inspire, we create a healthier world for all.

 

References

1.      Kilbride MK, Joffe S. The New Age of Patient Autonomy: Implications for the Patient-Physician Relationship. JAMA. 2018; 320(19): 1973-1974. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6988779/ 

2.      Almeida, D, Muhire, D, Gonzalez-Quevedo, R, et al. (2024). Leveraging patient experience data to guide medicines development, regulation, access decisions and clinical care in the EU. Frontiers in Medicine. Volume 11. https://doi.org/10.3389/fmed.2024.1408636

3.      Patient innovation: https://patient-innovation.com/ 

5.      Bibbins-Domingo K, Helman A, editors. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Washington (DC): National Academies Press (US); 2022 May 17. 2, Why Diverse Representation in Clinical Research Matters and the Current State of Representation within the Clinical Research Ecosystem. https://www.ncbi.nlm.nih.gov/books/NBK584396/ 

6.      Wale J, Scott AM, Hofmann B, Garner S, Low E, Sansom L. Why patients should be involved in health technology assessment. International Journal of Technology Assessment in Health Care. 2017;33(1):1-4. https://www.cambridge.org/core/journals/international-journal-of-technology-assessment-in-health-care/article/why-patients-should-be-involved-in-health-technology-assessment/A0B1B07CD3A49D4C4B8258D9AE54F13D?utm_campaign=shareaholic&utm_medium=copy_link&utm_source=bookmark 

7.      Bertelsen, N., Dewulf, L., Ferrè, S. et al. Patient Engagement and Patient Experience Data in Regulatory Review and Health Technology Assessment: A Global Landscape Review. Ther Innov Regul Sci 58, 63–78 (2024). https://doi.org/10.1007/s43441-023-00573-7 

8.      Coughlin SS, Vernon M, Hatzigeorgiou C, George V. Health Literacy, Social Determinants of Health, and Disease Prevention and Control. J Environ Health Sci. 2020;6(1):3061. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7889072/ 

9.      Johnson, N.F., Velásquez, N., Restrepo, N.J. et al. The online competition between pro- and anti-vaccination views. Nature 582, 230–233 (2020). https://doi.org/10.1038/s41586-020-2281-1 

 


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