Healthcare Advocates Using Social Media for Policy Change
In our digital world, social media has been a driving force in influencing so many behaviours and actions. It enables users to communicate ideas and messages — to and from practically anywhere, meaning that it comes as no surprise that it’s an influential driver in policy change. One particular area of policy that social media has been particularly influential in is health.
I have a relative that suffers from the genetic disease cystic fibrosis (CF). In simple terms, this incurable disease affects the lungs and digestive system of patients, causing them to develop an abnormal amount of excessively thick mucus. It causes irreversible damage to the body and its organs.
Three years ago, family members of mine who had been directly or indirectly affected by this illness started sharing a petition from Change.org on Facebook. This petition was created by CF sufferers and their families hoping that other people would sign for a drug known as Orkambi to become available on the Australian Pharmaceutical Benefit Scheme (PBS).
Orkambi is an oral drug that’s been proven to reduce hospital readmission rates of patients and improve their lung function. Before being added to the Australian PBS in October last year, it cost patients a hefty $250,000 per year just to be able to take it. With increased pressure and evidence to support Orkambi’s effectiveness in improving the wellbeing of patients, the government finally decided to subsidise the cost of this medication.
During my study as a public health student, I have become more aware of the role that social media can play in influencing policymakers. Although social media alone don't always cause for change, it can be an influential platform for everyday people to become advocates and use these technologies to inform, persuade and motivate others online.
Several researchers explored how media can impact health policymaking in Using Media to Impact Health Policy-Making. The researchers suggested that social media can shape public opinion by facilitating pressure being put onto policymakers, making them feel obliged to respond to public action. This is especially relevant in comparison to other forms of mass media (such as broadcast media, newspapers, etc.). The authors of this particular research identified that there are more affordances associated with social media and its influence on health policy. Social media offers “interaction, … peer support, and extend[ed] access to health interventions.” This means that people who are affected by health issues, health professionals and organisations can find a common ground that speaks to governments and policymakers.
Andreas Charalambous, a registered nurse and PhD in nursing identifies that social media works with organisations, governments and policymakers due to its universal reach. As I suggested previously, social media is probably one of the most effective platforms to influence policy. It allows people to advocate on particular health issues or concerns by using the powers of social media shareability to network with like-minded people (from almost anywhere) to achieve a common goal. It also brings awareness to other groups of people within their network who also have the power to spread concern of health-related topics. Shareability can then lead to a greater level of engagement with resources and information on a particular matter, as well as harnessing a broader range of opinions.
Health policy decisions are usually guided by evidence-based practice. In a unit that I undertook during my degree, I came to understand that this basically means that health policy needs to be guided by statistical and qualitative data. It also needs to consider the effectiveness and the potential impact that it will have for communities. What this means for people using social media to influence policymakers, is that there needs to be evidence to support a particular cause, especially if a policy change is specific to health.
Social media has been identified as an important force in understanding the behaviours and attitudes that people place on their own wellbeing or the wellbeing of others. As explored in the Change.org example, everyday people can utilize social media technologies to advocate for change. Though, it isn’t just everyday people who are participating in this action. Healthcare providers and other health industries are harnessing the powers of social media to influence these bodies as well.
In democratic societies, like our very own, it is important that people are engaged and are able to contribute to decision-making processes. Health issues are already complex, and therefore it is extremely important that governing health bodies consider the opinions of society. Often, healthcare professionals act as influential voices, making use of social media technologies to offer their “insightful experience of frontline health care… [and] personal connections.” These professionals are often found to hold a position of credibility that policymakers listen to and then later rely on to design and create health policies.
In 2012 advocates were able to utilise social media to revoke the planned discontinuity of funding to a breast cancer screening for Planned Parenthood Affiliates of America by Susan G. Komen (a non-for profit breast cancer foundation). As a response, the Planned Parenthood Affiliates of America turned to social media to launch a campaign against this decision. Within three days Komen revoked their initial decision due to the social media outpouring and the increased amount of likes that Planned Parenthood Affiliates received during that short time period. This example further demonstrates the increasingly important power that social media has in influencing health policies and organisational power.
The more health becomes a complex, yet important commodity, the more everyday people and health advocates will use social media to voice their concerns to policymakers and governments. As I have explored with the two examples, social media technologies enable everyday people and professionals a platform to voice concerns that are worthy of attention. Although social media alone does not drive policy change, it is becoming an enabler for advocates to communicate messages and share issues amongst wider networks, which causes policymakers to stop, listen and respond.
