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    • What do people look for in gene therapy materials? Results from our survey of patients and relatives

    April 2, 2025 | gene therapy, pharmaceutical industry, survey results 

    By Sam Fraser

    At AMICULUM, we are often enlisted by our clients to develop content for patients, ranging from disease awareness brochures to trial recruitment materials. And given our specialist expertise in genomic medicine, we frequently develop these materials for patients treated with gene therapies.

    However, the perspectives of the end-users of these materials – that is, patients and their families – can often remain a blind spot. To address this, we launched a survey for patients and their relatives to learn more about their views on gene therapy and the pharmaceutical industry more broadly, while also gaining insight into what they do and don’t find helpful in patient materials. The aim was to better understand the wants and needs of these audiences to inform how we approach future patient materials. Here, we outline the key findings from that survey.

    1. What were their perspectives on gene therapy?

    2. What were their perspectives on the pharmaceutical industry?

    3. What were their perspectives on sources of medical information?

    4. What are the key takeaways for pharma?

    Data visualization of survey participants

    What were their perspectives on gene therapy?

    Gene therapy is still fairly novel, and it can be difficult to gauge public understanding and perception of a relatively unestablished treatment modality. We opened our survey with a number of questions to explore this further.

    We found that most respondents had a positive perception of gene therapy, with 37% rating their perception as ‘very positive’ and 32% as ‘somewhat positive’. Only 4% of participants had a negative perception. This suggests that there is enthusiasm for gene therapy among patients and relatives, despite the various associated risks and unknowns.

    Respondents were also well-informed about gene therapy, with 59% indicating at least some knowledge and understanding of the modality and only 5% knowing nothing at all. This is perhaps to be expected, given the profile of the respondents, all of whom are in some way connected to an individual with a genetic condition. However, these numbers suggest that many people are proactive in educating themselves about this complex and nuanced therapy area.

    Correspondingly, a majority of respondents indicated at least a preliminary interest in participating in a clinical trial for a gene therapy (89%); however, many qualified this with a requirement for more information before making a final decision (40%). This is a promising finding for pharmaceutical companies with a gene therapy in their pipeline and supports the development of informative trial recruitment materials.

     

    What were their perspectives on the pharmaceutical industry?

    ‘Big pharma’ has a negative connotation in the general population, and some may associate the industry with untrustworthiness. To explore this further, we asked respondents about their general feelings towards the pharmaceutical industry.

    When asked whether they would trust medical information from a pharmaceutical company, encouragingly about half of respondents said yes (51%), with most of the remaining being unsure (38%). About one-tenth (11%) of respondents indicated that they would not trust medical information from a pharmaceutical company.

    When asked about factors that might influence their level of trust, 38% of participants indicated that having heard of a company before would positively influence its trustworthiness. In addition, some respondents were more likely to trust a large company over a smaller one (21%), although most (51%) did not feel this way. The majority of those surveyed (76%) did not feel that their level of trust in the industry had been negatively impacted by the COVID-19 pandemic.

     

    What were their perspectives on sources of medical information?

    A successful medical education campaign hinges on choosing appropriate channels for dissemination. With this in mind, we used our survey to examine where people generally seek information – and what they value most in the information they find.

    When respondents were asked to rank where they most frequently source medical information, doctors and other healthcare professionals were – perhaps unsurprisingly – ranked number one. In second place were patient advocacy groups, followed by websites (third) and social media (fourth). Pharma companies sat in fifth place, surpassing only newspapers (sixth) and TV/radio (seventh).

    When asked what they find most helpful in medical information, participants agreed almost unanimously on the value of case studies (97%), while many also appreciated illustrations to convey complex scientific information (87%). Conversely, when asked what they disliked, a significant number of respondents pointed towards materials that are too ‘superficial’, ‘shallow’ or lacking in technical detail.

     

    What are the key takeaways for pharma?

    Respondents generally had a positive perception of gene therapy, and most were willing to participate in a gene therapy trial.

    Despite the common characterization of ‘big pharma’ as untrustworthy, most respondents indicated that they would trust medical information from a pharmaceutical company; however, they may still prefer this to be channelled through another medium (eg a conversation with their doctor or a post on social media).

    Importantly, it appears that the size of a company is not a strong marker for its perceived trustworthiness, which is good news for the many start-ups and small-to-medium biotechs in this space. However, trustworthiness does appear to be at least partly influenced by how well known a company is, underlining the need for companies to establish a strong presence in patient communities.

    Finally, while patient materials are usually developed with simplicity and accessibility in mind, there is an appetite among some patients for more detailed, technical content. This is perhaps especially true for those living with genetic and rare conditions, who may have a higher standard of medical literacy than the average patient.

    Although our survey is limited by the small sample size – and a potential selection bias for more informed participants – the data shine a light on the perspectives of at least a segment of the patient population. These observations may inform not only content development for patient materials but also the dissemination strategy for these resources, as well as broader patient engagement initiatives.

     

    At AMICULUM, we work across the global healthcare community, and patient perspectives are at the heart of that. With specialist expertise in genomic healthcare, we understand just how important clear and transparent communications are in this field. We have a wealth of experience in communicating about complex cell and gene therapies in a way that resonates with patients.

    If you would like to discuss how we can support you, please contact Sam Fraser (sam.fraser@amiculum.biz). For more insights, visit the AMICULUM News and Insights page.

    This content was provided by Amiculum

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