Social media in patient engagement

It is hard to overstate the importance of social media in today’s healthcare ecosystem. Research has shown us that 74% of all internet users engage with social media, with a huge 80% of those people looking for health-related information or engaging with health-related topics.1  Social media has also become a place for people with chronic conditions to connect with each other, with research suggesting 40% of patients rely on social media to assess how others are dealing with and managing their condition.2




The pharmaceutical industry is well aware of the importance of social media, of course, understanding that today’s patients are better informed and typically looking for credible information and better tactics of engagement than the traditional leaflets or tokenistic social media posts.3 However, this understanding is yet to translate across the entire sector, with much social media activity from pharma falling short of engagement in favour of simple promotion.

Industry initially focused on social media as a listening tool – what can it gain from patients, whether it’s insights, protocol feedback/trial design, or something else. The industry has, however, slowly begun to be outward-facing in its social media usage, utilising such platforms for disease awareness, symptom awareness, and general awareness-raising campaigns. You could argue this was going to be inevitable, given how widespread social media use has become across almost every demographic of patients in almost every global market.

Social media platforms do present risks for the pharmaceutical industry, in the form of adverse event reporting, spread of disinformation, damage to professional image, breaches of patient privacy, violation of personal–professional boundaries, and licensing or legal issues.4 Guidelines to mitigate these risks do not always overcome companies’ reluctance to make use of social media in engaging patients.

This has led to the industry suffering from what Applied Clinical Trials called ‘social anxiety’, largely driven by concerns around adverse event reporting and promotional activities.

The risk of generating or inviting adverse event traffic has been one of the reasons behind the reluctance of the pharma industry in using social media for patient engagement. We’ve seen examples where this has been justified; in 2010, Sanofi shut down its Facebook page when a patient on one of their products ‘laid siege’ to the page with a flood of comments about the adverse events they were experiencing. This went ‘viral’ among other patients on the platform and beyond.5 Sanofi did later reopen the page – with the inclusion of a previously overlooked ‘terms of use’ policy.3

Furthermore, confusion and disagreement exist around identifying the reporter of adverse event information on social media. Both the FDA and the EU regulations allow room for interpretation, which allows doubts to creep in and undermine companies’ willingness to open themselves up to getting it wrong in favour of long-term improvement to communications, trust, and transparency.3

Similarly, in terms of brand promotion, companies must be very clear on their social media policies, particularly those marketing their products in multiple geographic locations with varying local regulations. Even in the US, which allows promotional messaging on social media, companies must follow FDA guidelines on presenting both risk and benefit information – a challenging factor with limited characters available depending on the platform.

Given the regulatory complexity for pharmaceutical companies in the social media space, it’s perhaps understandable that much of its activity is fairly formulaic. Innovation within the boundaries of the regulatory landscape is difficult – but not impossible.

The world of patient advocacy has fully embraced social media usage and arguably led the way in opening up these channels for engaging with patients and facilitating patient-to-patient communication. Although typically operating with fewer restrictions than pharma companies, what can we learn about patient advocacy-led social media campaigns that might help take industry’s social media output to the next level and reach more patients more effectively? How can pharma’s campaigns for disease awareness, insight generation, and clinical trial recruitment be improved with effective social media engagement?


Awareness raising campaigns


One of the biggest examples of an awareness-raising campaign is the Movember social media movement, which aims to raise awareness of men’s health issues and fundraise for those causes. From its inception in Australia in 2003, with a focus much more on the ‘lost art’ of moustache-growing than advocating for men’s health, to today’s globe-spanning annual Movember months, it is a great example of how a simple idea can go viral with the right messaging and cause.

Over 5 million ‘Mo Bros and Mo Sisters’ have taken part in the campaign to date (under the fantastic tagline ‘Changing the face of men’s health’), raising money and raising awareness for men’s mental health, suicide prevention schemes, and testicular and prostate cancer. Movember has raised nearly £400 million to fund more than 1,250 men’s health projects around the world including funding the development of 54 interventions, 70 therapies and 107 diagnostic tests for prostate cancer.6 It’s the sort of engagement and impact that most social media campaigns can only dream of.

As well as raising funds for research and community health schemes, one of Movember’s biggest impacts is its awareness raising. Movember tackles male mental health stigma head on, challenging unhelpful stereotypes or outdated perspectives through its direct language tone and distinct lack of airs and graces. This characteristic tone – direct, funny, no-nonsense but compassionate – helps Movember raise awareness about prostate and testicular cancers, including the importance of self-examination for testicular cancer, via campaigns such as ‘Nuts and Bolts’, ‘Check your Pair’, and ‘Give prostate cancer a kick up the a*se’.

The strength of Movember’s campaign has always been the community involvement. There is a very simple call to action – ‘grow a mo’ or support someone who does – that automatically creates a shared community, sense of purpose, and obvious participation ‘badge’ of a hairy top lip. It even taps into a competitive element through the awarding of prizes for the best moustache grown over the month. It’s a simple idea but has been the bedrock of the campaign’s success since its inception nearly two decades ago.

There is undoubtedly a freedom that Movember possesses which other patient social media campaigns do not, which is being able to have an irreverent tone, which in this case is vital in reaching their target patient community. Could pharma ever dare to tell patients to ‘Give prostate cancer a kick up the a*se’? Would that ever get past legal or brand team reviews? Perhaps not, but there’s an important lesson in this example that perhaps unbending from the typically formal language and tone of most pharma-led campaigns may help them stand out and – most importantly of all – better reach some of the hard-to-reach patient communities.

Awareness is arguably an area of strength in the industry’s social media outreach. Disease/symptom awareness campaigns and sharing patient case studies allow pharmaceutical companies to engage with patient and public online communities compliantly, raising the profile of disease covered by their products without straying into promotional waters. It would be nice to see further steps taken to innovate within the confines of the regulatory landscape, and for pharma to feel freer to launch ‘disruptive’ campaigns.


Patient insight generation


A 2020 study found that during the ongoing COVID-19 pandemic, cancer patients turned away from formal healthcare settings and engaged with social media for support and to share their stories. The study concluded that even as lockdown measures start to ease and patients are able to access formal healthcare services, social media will remain an important platform for patients.7

If this is where patients can be found, then it’s all the more important that industry finds ways to engage via social channels in order to keep the patient voice as a focus in their activities – a cornerstone of the move to patient-centric working practices.

Partnerships with online patient communities such as PatientsLikeMe allow industry to track real-world patient experiences. In 2017, Shire Pharmaceuticals partnered with PatientsLikeMe to develop digital communities in rare disease to allow anyone with a chronic condition the opportunity to track and share symptom and treatment experiences and contribute data for research.8 Similar partnerships with AstraZeneca and Genentech, among others, have allowed these companies to ‘harness important perspectives’ of patients in a number of disease areas.9

Social media listening is another tool worth exploring to gather patient insights. Mining social media-generated content can provide a greater understanding of the patient experience and insight into specific support needs.10 The COVID-related study above features social media listening – 2,469,822 tweets and 21,800 online conversations were analysed, showing that concerns around delayed diagnosis, cancelled appointments, missed treatments and weakened immunity and mental health were common. This is a huge amount of data, coming direct from patients at a fraction of the cost and much faster than would be possible in face-to-face interactions.

So, social media can be seen as an easily accessible source of realistic patient insights and genuine day-to-day experiences, potentially more representative than more complex and costly initiatives.


Patient advocacy


Social media can facilitate connections and build a sense of community for patients. In rare diseases, social media’s ability to unify patient populations across vast geographical locations means communities can be formed for patients who otherwise may never have contact with someone else with their condition.11

Closed Facebook groups or specific platforms, often run by Patient Advocacy Groups, provide places for patients to share experiences, discuss issues, and become informed about their condition. Ongoing interactions and proactive communication help galvanise the community to achieve their goals – this could be lobbying at government level or something smaller in scale.

Patient advocacy groups often use social media as a primary tool for engaging with their patient communities and often do so via successful, innovative campaigns. The British Heart Foundation (BHF), for example, recently ran a series of campaigns aimed at raising awareness of the risks of high blood pressure and getting it checked. Initial research showed two distinct target audiences – those at risk of high blood pressure, and those already diagnosed who need to quickly make lifestyle changes. Digital targeting then ‘came into its own’ – by carefully segmenting their audience, they could create three different personalised landing pages to provide each audience with the message they needed. Strong graphics and targeted social media advertising bolstered the campaign, which saw 4 million people reached and a 72% increase of traffic to their informational content.12


There is clearly an opportunity for pharma to engage and support patient communities in similar ways via social media platforms. However, to be really valued these platforms need to harness the benefits they provide – becoming avenues for patient engagement and empowerment, improved informational support, stronger patient-doctor relationships and providing opportunities for clinical and research study participation.


Social media as a recruitment tool


Over the last ten years, social media has become one of the most successful methods that can be used for patient recruitment. Reaching people where they already are is a key element of any promotional activity, and people are certainly spending a lot of time on social media – e.g. Facebook, which has nearly 3 billion regular users.

Two of the most effective social media activities that can be undertaken for patient recruitment are:

  • Social Listening – identifying the platforms where potential trial participants are already discussing relevant topics
  • Digital Advertising – reaching out to a wide audience of people and targeting them with a relevant message

Social listening is more commonly associated with finding out what people think about a particular brand or product. In the case of patient recruitment, what we’re doing is picking out what people are discussing that would be relevant for a particular trial – e.g. mentions of a specific condition.

The tools available for this type of social listening enable us to identify the social media platforms where people are most actively discussing these relevant phrases (e.g. Facebook, Twitter, Snapchat, Reddit, TikTok etc.). We can then reach out to the people who are most active in the discussion – the Digital Opinion Leaders – and engage in a dialogue regarding the trial. This is a far more patient-focused approach than simply using blanket coverage messaging.

Digital advertising has evolved into one of the main tools used by patient recruiters, almost entirely replacing the more traditional forms of advertising such as press or radio.

The targeting options available through platforms such as Facebook, combined with the machine learning algorithms they utilise, enable us to present our message in a more sophisticated manner. This results in our being able to engage with enthusiastic and knowledgeable patients to introduce the trial to them – again based on a more patient focused approach than would otherwise be possible.


Effective partnerships


Sometimes it can be helpful to partner with other organisations to strengthen a campaign or reach a specific audience. A good recent example of this was Acadia Pharmaceuticals’ ‘Yours, Truly’ campaign launched in partnership with non-profit organisation StoryCorps.

Aiming to raise awareness about the lesser-known mental symptoms of hallucinations and delusions in Parkinson’s disease, the campaign – delivered in a bi-lingual format for English and Spanish speaking audiences – invited patients to record conversations about their experiences, which would then be stored in StoryCorps’ national archive for preservation.

By partnering with StoryCorps, the campaign will have a far longer life than had Acadia launched it independently and kept it limited to social media platforms, as StoryCorps will take it ‘on the road’ across the US in 2022 using their MobileBooth recording trailer.13


Importance of platform choice


Not all social media platforms are alike, particularly when it comes to their user demographics. For example, 78% of all 30-49-year-olds use Facebook, giving the platform a slightly older user profile14 than TikTok, which has approximately 70% of its users aged between 13 and 24.15 A recent study found that TikTok would be a social media platform well suited to reaching younger people about HPV vaccine information, given the user demographic and ‘personal experience’-based content.15

Some pharma companies are well aware of this already. Novartis, for example, recently launched the first dance challenge from a prescription brand on TikTok.16 Others will be sure to follow.

So, picking the right platform for a specific campaign can make the difference between a successful campaign and one that never gets off the ground. Different platforms tend to have different user demographics, so it is good practice to spread campaigns across multiple sites to reach the right people.




Pharmaceutical companies have been launching geography-based social media strategies based on their target audiences for several years. Internally, this calls for increased harmonisation and alignment in social media efforts across countries and regions, while staying compliant with local regulations.3 And although compliance and regulations can’t be ignored, they shouldn’t be used as a reason to avoid being innovative in social media.

Disruptive campaigns, eye-catching or confronting language and tone, effective partnerships and careful use of audience segmentation can all help improve social media activities aimed at patients.

For effective trial recruitment via social media, social listening and digital advertising are two key areas to focus on to identify and reach Digital Opinion Leaders and raise awareness in the right places.

With early studies suggesting patients will remain focused on social media as their gateway to their health services and information following the remote living of the COVID-19 pandemic, it will be fascinating to see how industry adapts to reach and support patients via these platforms. Get it right, and done in a patient-centric way, and the possibilities for improving patient experience and outcomes are endless.




  1. 30 Facts & Statistics on Social Media and Healthcare. Referralmd. 2017. [Accessed online at]
  2. 24 Outstanding Statistics & Figures on How Social Media has Impacted the Health Care Industry. Referralmd. 2013. [Accessed online at]
  3. Limaye, N & Saraogi, A. How Social Media is Transforming Pharma and Healthcare. Applied Clinical Trials, Applied Clinical Trials-02-01-2018, Volume 27, Issue 2.
  4. Ventola CL. Social media and health care professionals: benefits, risks, and best practices. P T. 2014;39(7):491-520.
  5. Pharma Marketing Blog. 2010. [Accessed online at]
  7. Moraliyage H, et al. Cancer in Lockdown: Impact of the COVID-19 Pandemic on Patients with Cancer. The Oncologist. Nov 2020. Vol 26, Issue 2.
  8. Online network PatientsLikeMe partners with Shire Pharmaceuticals to improve research, treatment for rare diseases. Mobihealthnews. 2017. [Accessed online at:]
  9. AstraZeneca and PatientsLikeMe team up on real-world data. PMLive. 2015. [Accessed online at:]
  10. The importance of social media for Pharma. Research Partnership. 2021. [Accessed online at:]
  11. The Unwritten Rules for Patient Advocacy on Social Media. Pm360. 2018. [Accessed online at:]
  12. Personalising marketing and content to audience needs. CharityComms. 2018. [Accessed online at:]
  13. Acadia gives voice to personal stories about Parkinson’s psychosis in new bilingual campaign. FiercePharma. 2021. [Accessed online at:]
  15. Boatman DD, Eason S, Conn ME, Kennedy-Rea SK. Human Papillomavirus Vaccine Messaging on TikTok: Social Media Content Analysis. Health Promot Pract. 2021 May.
  16. Engaging the Masses. Pharma Times Magazine. July 2021. [Accessed online at:]


Get in touch with the Prime Patient team via email ( or Twitter (@PrimePEPTalks) to learn more about how we activate patient insights to deliver a triple win for patients, pharma, and society.

Read more about our work in Patient Engagement here 

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