Is a social media backlash still the disaster it once was?

You don’t have to spend long working in the pharma space to understand that we’re living in an age of revolutions. Two, particularly, are changing the business on a fundamental level: Precision medicine—treatments tailored to individual genetic profiles—is leveraging AI to transform healthcare to tailor medicine to the individual. Meanwhile, social media listening is reshaping how we can understand the needs of both patients and HCP’s in a way that is faster, cheaper and often more accurate than traditional market research. Patients, families, and organisations are using social platforms to discuss personalised treatments in ways that reveal insights traditional research often misses. The two revolutions are, in some ways, very separate disciplines within the industry. In other ways, however, they’re absolutely linked. By listening to these conversations, healthcare providers and policymakers can address patient needs around PM far more effectively.

Why Precision Medicine Conversations Are Different

Discussions about precision medicine are more complex than general healthcare debates, something that’s very clear when we look at the NHS Genomic Medicine Service’s work with whole genome sequencing. They’ve found that public conversations often highlight challenges unique to genetics. Privacy concerns, for example, extend beyond keeping medical data confidential—people worry about how their genetic information might affect their family members or future opportunities.

These discussions also reveal deeper family dynamics. One person’s test results can have implications for their entire family tree, from genetic counselling to decisions about sharing sensitive information. Social media exposes these complexities, helping organisations identify and address concerns.

Social Media as a Listening Tool

Social listening—analysing online conversations—helps organisations understand these challenges in real time. For example, Genomics England (@GenomicsEngland) can now monitor public responses to their initiatives, uncovering patterns in how communities process genetic data. Questions arise that wouldn’t in other contexts: Could sharing my genetic information affect my child’s chances at certain jobs? Should insurers have access to this data?

These insights don’t just sit idle. The Global Alliance for Genomics and Health uses what they learn to refine data protection policies, ensuring they meet public concerns. It’s a tangible connection between online discussions and outcomes and shows how powerful social media can be for shaping healthcare policy.

The Role of Social Listening in Pharma

Pharmaceutical companies are also reaping the benefits of social listening. Traditional research often struggles to capture the nuances of precision medicine, but online conversations bridge that gap.

Rare Disease UK (now Genetic Alliance UK) has done a lot of work highlighting barriers to accessing genetic tests, highlighting challenges that traditional research often overlooks. By amplifying patient experiences and concerns, these campaigns have underscored the need for patient-centred approaches in areas like the timing of genetic test results and the support required for families navigating complex decisions. These insights play a crucial role in shaping more effective and accessible healthcare solutions.

Improving Healthcare Delivery

The NHS Genomic Medicine Service has taken social listening a step further. Their #GenomicsConversation campaign started as a way to engage the public but quickly evolved into a feedback tool. By analysing these discussions, they’ve identified gaps in support services—like genetic counselling or help with family communication—that are critical to making precision medicine work for everyone.

Shaping the Future of Clinical Trials

Social media is also reshaping clinical trial design. Patients share their experiences with genetic testing and treatments online, providing valuable insights for pharmaceutical companies. These discussions highlight practical issues, such as how long patients are willing to wait for test results or the challenges of involving families in treatment decisions. By listening to these concerns, trial designs can become more patient-friendly and effective.

Looking Ahead

As precision medicine continues to advance, public understanding and acceptance will play a crucial role in its success. It's easy to view precision medicine through a lens of genetic codes and targeted treatments, and that, after all, will always be the black and white, on-paper heart of the issue. However, to be really effective we need to approach it in a more holistic way, listening to patient voices and understanding that social media has become a permanent part of the tool kit for understanding how precision medicine can better serve patients.

Social listening offers healthcare providers and policymakers an invaluable tool for identifying concerns and addressing them early. The NHS’s work shows how monitoring online discussions can improve service delivery and build trust with patients.

The future of personalised healthcare doesn’t depend only on cracking genetic codes—it hinges on understanding healthcare audiences so we can communicate breakthroughs in ways that relate to them. Social listening offers a unique way to bridge that gap, ensuring precision medicine evolves alongside the needs and expectations of patients and families.

We just need to ask ourselves: are we ready to listen?

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Category: PATIENT-CENTRIC HEALTHCARE

How Social Media is Transforming Precision Medicine Development