Patients are regularly turning to the internet and social media to gain medical information or share their experiences, which has led to the relatively new concept of patient influencers. Following her participation at the 19th Annual Meeting of the International Society for Medical Publication Professionals (ISMPP), The Publication Plan spoke to Amrita Bhowmick, Chief Strategy Officer at Health Union and Adjunct Assistant Professor at UNC Gillings School of Global Public Health, to learn about the role of patient influencers and online communities and to find out how digital platforms can be used to increase patient engagement.
Health Union is a digital health company that develops condition-specific online communities. Could you tell us a bit more about the online community model at Health Union and how you went about developing it? What were the key considerations and the main challenges you encountered?
“At its core, our community model is focused on “meeting people where they are” in a way that provides information, validation, and support. Unlike many initiatives in healthcare, we aren’t looking to change patient behaviour – rather to provide social support, which is proven to have a positive impact on patient engagement, morbidity, and mortality. Our model puts patient leaders (or “patient influencers”) at the core of the community – ensuring that the communities are truly built for patients by patients.
Moderation is an essential ingredient for the communities’ success – our moderators have extensive training to ensure they are prepared to handle whatever may come their way in a clear, consistent, and transparent manner. This is an area of continuous improvement to ensure we are prepared to adapt as quickly as technology and online behaviours evolve. Maintaining a safe space for our members while encouraging engagement and transparency requires a very fine balance.”
Are you seeing an increase in the use of online health communities? Why are they such an important resource for patients?
“The internet and social media continue to play a growing role in how people engage with their health.”
“The activity level in our communities has increased consistently over time across all conditions. This is not surprising given the macro level data we’ve seen – the internet and social media continue to play a growing role in how people engage with their health. We know that 5% of all Google searches are now health related and one survey found that 60% of Gen Z respondents said social media influencers impacted their mental health decisions.”
At the Annual Meeting of ISMPP 2023 you talked about the value of patient engagement in health research. What do you think are the main benefits of involving patients throughout the drug development process?
“There are so many benefits to including patients in the drug development process –ranging from identifying a target product profile that truly meets the needs of patients to developing clinical trials with improved retention rates. Patients can also help ensure communications are clear and compelling, and can help with the trial recruitment process (particularly in the areas of communication, education, and reach).”
What more could be done by pharmaceutical companies, publishers, or others working within medical communications to encourage patient engagement?
“Engaging patients early in the process is the best way to truly drive patient engagement – ensuring that patient considerations are accounted for in every step of the process versus trying to retrofit to patient needs on the backend. Small changes that are easy to make up front (to patient-friendly language, for instance) can have a very meaningful impact on outcomes. These changes are often far more difficult to make later in the process.”
Plain language summaries are sometimes included in medical publications – how important do you think these are in disseminating information to patients?
“The more we can do to make health information accessible to patients, the better! Having patient leaders promote and explain these plain language summaries could further increase the reach and impact of the content.”
Do you think social media should be more widely used as a means of sharing medical information directly with patients? What are the potential challenges or risks involved in doing so and how should these be managed?
“Social media continues to play a critical role in how individuals consume content, including health information. Our “meet people where they are” model focuses on meeting people where they are in their health journey, but also focuses on meeting people where they are physically – this includes social media platforms to ensure we are as accessible as possible for our members.
Providing information in a clear and transparent way that is truly intended to engage with patients is the most effective way to encourage positive dialogue – authenticity and a willingness to engage are critical ingredients for success. However, it is important to be prepared for this engagement – plan for the questions/comments that may arise and have a shared agreement for how to handle these situations in a transparent manner.”
“Providing information in a clear and transparent way that is truly intended to engage with patients is the most effective way to encourage positive dialogue.”
The concept of “patient influencers” is relatively new. Could you explain what is meant by this term and describe the positive impact patient influencers can have within medical communications? What are the considerations regarding potential misinformation?
“While the concept of patient influencers is new, the idea of community leaders is not. For instance, public health officials have worked with community leaders (for example barbershops, beauty parlours, places of worship) to support educational initiatives for decades. Community leaders have established relationships with their constituents that are highly effective in driving effective communication and engagement.
Patient influencers can be viewed as the online version of these community leaders – respected leaders who build connections with their followers via their personal story and experiences. Our research shows that patient influencers are highly effective in communicating health information and can even increase self-efficacy.
Patient influencers typically distinguish themselves from the broader “influencer” industry as their focus is health- or disease state-specific. Our research shows that these individuals, who are aware of the misinformation pitfalls, value responsible communication and are very cautious not to provide medical advice. Providing clear guidance and training regarding a particular health program is the best way to ensure partners consistently communicate in the most accurate manner.”
How could technology play a bigger role or be better leveraged within the pharmaceutical or medical communications industries to encourage patient engagement or to communicate more effectively with patients?
“Technology allows us to reach and engage with patients at a scale that has never been possible before.”
“Technology allows us to reach and engage with patients at a scale that has never been possible before. Leveraging the available tools can also help the healthcare industry identify and reach patients in a highly targeted manner – at scale. Engaging patients, or patient influencers, as part of the process for drug development and/or health communications will further increase the likelihood of success by ensuring the patient perspective is consistently in focus.”
Amrita Bhowmick is Chief Strategy Officer at Health Union and Adjunct Assistant Professor at UNC Gillings School of Global Public Health. Amrita can be contacted via amritab@email.unc.edu or LinkedIn.
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