Social Networking

Using social media to build confidence in vaccines: lessons from community engagement and social science research in Africa

  1. Sara Cooper, researcher123,
  2. Muktar A Gadanya, professor4,
  3. David Kaawa-Mafigiri, researcher5,
  4. Patrick D M C Katoto, professor367,
  5. Evanson Z Sambala, researcher8,
  6. Elvis Temfack, researcher9,
  7. Charles S Wiysonge, professor131011
  1. 1Cochrane South Africa, South African Medical Research Council, Cape Town, South Africa
  2. 2School of Public Health and Family Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa
  3. 3Department of Global Health, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa
  4. 4Bayero University/Aminu Kano Teaching Hospital, Nigeria
  5. 5School of Social Sciences, Makerere University, Uganda
  6. 6Centre for Tropical Diseases and Global Health, Catholic University of Bukavu, Democratic Republic of the Congo
  7. 7Centre for General Medicine and Global Health, University of Cape Town, South Africa
  8. 8Department of Community and Environmental Health, School of Global and Public Health, Kamuzu University of Health Sciences, Blantyre, Malawi
  9. 9Division of Public Health Institutes and Research, Africa Centres for Disease Control and Prevention, African Union Commission
  10. 10HIV and other Infectious Diseases Research Unit, South African Medical Research Council, Durban, South Africa
  11. 11Vaccine Preventable Diseases Programme, World Health Organization Regional Office for Africa, Brazzaville, Congo
  1. Correspondence to: S Cooper sara.cooper{at}mrc.ac.za

Sara Cooper and colleagues argue that a better understanding of the complex sociopolitical drivers of distrust in vaccination will increase the potential of social media to rebuild vaccine confidence

Vaccination experts have become increasingly alarmed about the continued waning of public confidence in vaccines.1 Social media are considered to be major contributors to this decline, facilitating the rapid and widespread sharing of misinformation, enabling vaccine anxieties and rumours to travel rapidly around the world.23 Social media are also seen to have enabled vocal anti-vaccination groups to self-organise and communicate well beyond their local areas.45 The covid-19 pandemic has only magnified these concerns,6 as Tedros Adhanom Ghebreyesus, director general of the World Health Organization put it, “We’re not just fighting a pandemic; we’re fighting an infodemic.”7

This dominant narrative on mistrust in vaccines assumes that it is primarily the result of a lack of information, and therefore if individuals are provided with knowledge about the benefits and value of vaccines, uptake will rise. However, public health research from a critical social science perspective has highlighted the limitations of this view, which is referred to as a “knowledge deficit” framing.89101112 Critical social science analyses power structures and relations with the aim of unsettling widely held assumptions and uncovering the roots to health problems that lie within social systems and institutions.13 It has shown that the dominant model on vaccine mistrust obscures the contexts shaping how people interpret and respond to information, often critically, along with the socio-political drivers of vaccine confidence that are not related to knowledge.10 Ultimately, it has highlighted that the roots of declining public confidence in vaccines are potentially deeper and more complex than concerns about social media would have us believe.

Drawing on this critical social science scholarship, we argue for a more critical perspective on vaccine confidence—what it is, what hinders or drives it, and what may help to (re)build it—and examine how core characteristics of social media could be effectively harnessed to foster vaccine confidence.

What is vaccine confidence and what drives or hinders it?

Vaccine confidence refers to the belief that vaccination, along with the public, private, and political entities implicated with it, serve the public’s best interests.1415 Confidence in vaccines is therefore about trust and relationships—trust in vaccines, the scientists who design and develop them, the industries that produce them, the professionals who deliver them, and the systems that govern them.9 Distrust in these entities is not a single problem; the way it manifests and why it occurs varies considerably across place, populations, time, and even vaccines.16 The reasons for distrust are also strongly anchored in social, political, economic, and historical realities (box 1).17

Box 1

Examples of key factors that can promote or undermine vaccine confidence

  • Vaccine specific issues—for example, side effect profiles; growing numbers of vaccines now available (often tailored to specific populations); changes and differences in vaccination schedules; new vaccines (eg, HPV vaccines), and those developed and tested in a relatively short time frame during a pandemic or epidemic (eg, for covid-19 and Ebola virus disease).14

  • Scandals or controversies, particularly if perceived to have been handled with inadequate transparency, may cause people to distrust authorities’ motives.17 For example, the French public’s negative perception of the government’s management of the 2009 influenza A/H1N1 pandemic undermined confidence in the overall vaccination system.18

  • Relationships and interaction with healthcare professionals, and whether people feel they have been mistreated or supported, can contribute to public trust or distrust in them and what they promote.17 For example, a study in Sierra Leone found that experiences of humiliation and mistreatment by healthcare workers led some people to avoid healthcare services and hide their children during immunisation campaigns.19

  • Disenchantment with science20— Parents in a US study, for example, attributed their distrust of HPV vaccination for their children to their growing disillusionment with biomedicine and its health benefits.21 Some parents, as revealed in a study in the UK, may feel alienated from scientific and medical systems seemingly devoid of human emotion and in which they feel unheard and lacking agency.9 These sentiments may lead to distrust in vaccinations as well as the professionals and institutions promoting them.

  • Social exclusion and marginalisation may rupture citizen-state relations, leading excluded communities to become distrustful of health initiatives when they are disadvantaged in so many other aspects of their lives.17 For example, the 2003-04 polio vaccine boycott in northern Nigeria was partly driven by the years of disproportionately high levels of poverty and inadequate public services in affected states, which led to greater suspicion of government programmes among affected communities.22

  • Geopolitical relations of inequality and oppression, both contemporary and historical, can provide a fertile ground for distrust. For example, public questioning of, and reservations about, covid-19 vaccines in various African countries have been linked to the global politics surrounding them, including wealthy countries procuring the majority of vaccine supplies for their own populations (vaccine nationalism), together with the donor dependencies and patent laws surrounding the vaccines.23 These factors created large inequalities in vaccine access but were also stark reminders of a history of colonial medical research abuses and, more recently, patent laws which denied communities access to drug treatments tested on them as research participants, such as antiretroviral treatment for HIV/AIDS.24 All of this contributed to distrust of covid-19 vaccines and the individuals and institutions responsible for their development, distribution, and governance

  • Top-down vaccination initiatives that do not involve local leaders and affected communities in the design and implementation can drive distrust.10 For example, Ebola vaccine trials in the Democratic Republic of the Congo,25 tetanus vaccination campaigns in Kenya,1617 and HPV vaccination programmes in Japan and India16 were all delayed or stopped because of communities feeling excluded or not properly consulted in the process.

RETURN TO TEXT

Many of the drivers of vaccine confidence are not about vaccines themselves, but about the relationships that people have with institutions, systems, and authorities—big and small; past and present.9 Distrust in vaccines and the entities behind them is not always unreasonable or irrational.10 It sometimes relates to genuine concerns about the intentions of authorities, to processes whereby people feel disrespected or unheard, or to feelings of betrayal by systems meant to provide protection.89101112

What do we know about (re)building vaccine confidence?

Providing consistent and scientifically accurate evidence on the safety of vaccines and the balance of risk and benefit is essential to support public confidence in vaccines.26 But information alone will not stop public distrust of vaccines, as anthropologist and founding director of the Vaccine Confidence Project, Heidi Larson, argues9: “Vaccine reluctance and refusal are not issues that can be addressed by merely changing the message or giving ‘more’ or ‘better’ information … the bigger issue is the underlying distrust, the feeling of being disenfranchised and not heard.” Building confidence in vaccines therefore necessitates identifying and targeting the complex reasons fuelling distrust, so that more trusting relationships between authorities and citizens can be developed. Here valuable insights can be drawn from risk communication sciences (box 2),26272829 particularly those that stress context, transparency, two-way communication, and avoiding simplistic solutions to multifaceted problems.

Box 2

Key communication principles to build trust26272829

  • Ground communication in context specific reasons for distrust—This requires a thorough understanding of the reasons driving distrust for particular vaccines, populations, and settings. Our understanding must evolve as sentiments can and do change. Quantitative surveys that identify associations and temporal trends should be complemented by qualitative research to gain nuanced understandings of drivers, features, and trajectories.

  • Communicate with honesty and openness—Overly confident statements without nuance risk undermining trust and credibility. Transparency about potential vaccine risks and side effects, as well as knowledge gaps and uncertainties, is therefore important. So too is honesty about the research and decision making surrounding the vaccine, including any inequities in vaccine access. Acknowledging negative events with humility, such as research malpractices and past mistakes, is also critical.

  • Use trusted individuals or organisations to convey messages and serve as vaccine endorsers. The credibility of a message is strongly influenced by the perceived trustworthiness of who delivers it. Potential trusted influencers could include celebrities, politicians, faith, and cultural leaders, orthodox or alternative healthcare providers, or more local non-government and civil society organisations. Trusted sources should be identified through research rather than assumed.

  • Communicate in engaging, creative, and relatable ways, including using imagery and media touching on positive emotions and storytelling (eg, personal accounts). These often resonate more with people than statistical information and complex scientific evidence. Tailoring communications to intended audiences is also important, including using local languages and dialects, building on context-specific terminologies and meanings, and using preferred communication mediums and channels. Communication preferences and language needs should be identified through research rather than assumed.

  • Two-way communication and empathy—Encourage and facilitate two-way communication using empathy to allow for feedback and addressing any concerns or questions. For example, patient-centred motivational techniques within patient-healthcare worker encounters may help to build trust through listening in non-judgmental ways and avoiding trying to correct “false” opinions. It is also crucial to avoid using language that stigmatises or labels such as ignorant, misinformed, irrational, resistant, or selfish. Equipping healthcare professionals with the necessary communication skills and knowledge is essential.

RETURN TO TEXT

Sharing scientific evidence, albeit in more creative, understandable, and trustworthy ways is, however, not sufficient to foster vaccine confidence.9 It also requires more comprehensive community work to build trust.910 Here expanding the principles and practices of risk communication science with more critical community engagement scholarship could be beneficial.26 Specifically, much can be learnt from the rich history of community engagement and social sciences research in various African countries—for example, in the context of polio eradication efforts,1622 HIV/AIDS treatment advocacy,30 Ebola outbreak responses and vaccine trials,253132 malaria vaccine trials,33 and most recently covid-19 vaccines.34 Experiences from these initiatives underscore the power of engaging deeply with affected communities, their socio-cultural contexts, and working together with them to identify and respond to health challenges (box 3).

Box 3

Key principles for engaging communities to build trust

  • Genuinely listen to community concerns—Creating spaces for people to voice their concerns, and genuinely listening to these on their own terms (rather than dismissing or trying to correct them) cannot be overemphasised. This includes people’s concerns about vaccination, but also the wider range of socioeconomic challenges that they prioritise. This was clearly demonstrated in the polio eradication initiatives in Nigeria, whereby extensive, block-by-block research and house visits were conducted to listen to people’s views and experiences. In addition to providing novel insights into the reasons for vaccine refusal, through these visits communities also felt heard and in turn were more willing to listen.1622

  • Facilitate open exchanges and active dialogue that encourage questions, debate, and conversations. This includes not shying away from awkward conversations about politics, power, and interests, as well as the broader structural injustices people face. For example, South Africa’s Treatment Action Campaign was successful at building HIV/AIDS treatment literacy through a communication approach that focused on rigorous dialogue rather than depoliticised education that presents information in a one-way manner.30 Specifically, communities were brought together to discuss information about the science of medicine and health, and to debate how these may be linked to politics, human rights, equality, and state obligations.

  • Foster community-based responses and ownership of initiatives, including empowering affected communities and local leaders as primary partners in defining vaccine research agendas and in co-designing, planning, and implementing vaccination initiatives. Where possible, these processes should align with existing community led measures and structures. For example, in South Africa the government’s “Vaxi Taxi” initiative partnered with communities—local community kitchens, trusted community leaders, neighbourhood crime watch groups—to provide covid-19 vaccines close to where people live using public spaces.34 This bottom-up approach fostered a strong sense of community ownership and in turn trust and acceptance of the vaccine initiative.

  • Recognise that communities are not homogenous and understand intra-community power dynamics and structures.31 This is important to ensure that voices from various levels of the community are properly heard and potentially incorporated. For example, knowledge gained about the complex community power relations surrounding the Ebola vaccine trial in Sierra Leone suggested the need to diversify engagement methods and avenues.31 A variety of engagement channels were therefore implemented, rather than relying solely on established leadership, including for example one-to-one conversations, house visits, community meetings, and public broadcasts.

  • Sustain dynamic and ongoing engagements over time rather than one-off interactions. Sentiments can change and therefore effective engagements need to be responsive to this. Trust can also grow incrementally through ongoing relationships of engagement and reciprocity. For example, during a malaria vaccine trial in Kenya the gradual reduction of engagement activities once trial numbers had been reached produced various negative effects, including resentment amongst community members.33 This was mitigated by changing the structure of community engagement to make it more sustainable and long-term.

  • Incorporate social science research in the development and implementation of community engagement. Research-driven communication and public engagement is essential to their effectiveness.14 Social science research specifically can provide in-depth understanding of contexts, time, and processes, which are vital components for early and meaningful engagements. For example, by establishing the Social Sciences Analytics Cell as part of the Ebola outbreak response in the Democratic Republic of the Congo, ‘close to the ground’ social science evidence on the complexities of specific concerns and dynamics were able to be revealed.32 These were then used to embed community engagements and other responses within local needs, priorities and realities, effectively avoiding the kind of ‘top-down’ responses implemented in previous Ebola outbreaks.

RETURN TO TEXT

What can we learn for using social media to build vaccine confidence?

Various digital interventions, including those using social media, have been developed over the past decade seeking to enhance vaccine acceptance and uptake.3536 The effectiveness of these interventions have been mixed, with many having limited or no positive effect.37 Many of these interventions are also based on the knowledge-deficit assumptions that we described as underpinning dominant thinking on vaccine confidence.3839 That is, and not withstanding certain important exceptions,4041 there is a tendency for these interventions to focus on communicating scientific evidence to enhance knowledge about vaccination and to debunk misinformation and disinformation. We suggest how some of the core concepts we outline above might be used by social media interventions to build vaccine confidence in ways that better appreciate and target its complex socio-political drivers.

Use social listening to understand and ground communications in reasons for distrust

Social media’s pervasiveness and speed makes it a potentially useful mechanism for ‘social listening’ of community concerns and sentiments.42 Importantly, this can be done in real time and in an ongoing fashion, allowing for tracking of potentially changing views.42 Moreover, social media comprises fragmentation of viewers and interests with, for example, specific platforms often differentiated by socio-demographic group, which allows for more granular understandings of community sentiments.43 Social media can therefore be utilised to listen to people’s concerns about vaccines and help gain an ongoing understanding of the context-specific reasons for distrust, through which more tailored and targeted responses could be developed.

For example, the Minority Rights Group’s diversity impact on vaccine equality (DIVE) project is using social media listening and monitoring tool CrowdTangle to track and understand online sharing about covid-19 vaccines across diverse ethnic, religious, and linguistic communities in Algeria, Kenya, Pakistan and Sri Lanka.44 Specifically, it is monitoring social media platforms (such as Twitter and Facebook) for sentiments related to reservations about the vaccine, trust in health and other authorities, frustration about lack of supply, and grievances concerning disparities in supply or selection of vaccines. Sentiments are disaggregated using language, language markers, names, and locations to determine which comments are made by which groups. The findings are being used to produce locally relevant social media materials in multiple languages that are tailored to the specific reasons for mistrust among specific groups. In Sri Lanka, for example, low levels of vaccine confidence were found to be much more prevalent among Muslim and Tamil users, whose main concern was around vaccine safety; this information was used to inform the content and scope of the online campaign to promote vaccine confidence among the small numbers of people who remained unvaccinated against covid-19.45

Leverage trusted individuals or organisations

Social media also provides a potentially unique opportunity for using trusted individuals or organisations to engage the public and convey vaccination messages.43 Bloggers and other social media actors are often influential, locally and globally.46 Collaborating with these influencers to serve as vaccine endorsers could provide a relatively easy way to reach large audiences by individuals deemed trustworthy.26 For example, the Nigerian Urban Reproductive Health Initiative successfully worked with popular local bloggers to promote reproductive health and childbirth spacing in Kano state.47 Similarly, celebrities in Nigeria, such as Nollywood actors and football stars, used their reach on social media platforms to promote covid-19 vaccine acceptance, including vocally encouraging vaccination, emphasising the safety and effectiveness of the vaccine, and sharing photos of themselves being vaccinated. These endorsements helped enhance fans’ confidence in the vaccine and their willingness to receive it.48

Facilitate creative, two-way, and open forms of engagement

The diverse capabilities of social media—such as widgets, online video/image sharing, graphic buttons, games, feeds, podcasts, microblogs, chatting, and forums—offer a rich environment for communicating in creative ways that resonate with people.35 Moreover, social media are about open exchange and “user centred” interaction.46 Through social media people can freely share ideas, respond to information, and discuss their experiences. This offers immense possibilities for communicating with, rather than to, the public.3649 As such, different social media platforms provide spaces that can be used to facilitate open dialogue and conversations about vaccination. They could also enable the dynamic and ongoing (rather than one-off) interactions so essential to building trust. Moreover, the feedback mechanisms and other two-way communication supported by many social media tools means that questions can be invited and responded to almost immediately.49

All of these features, and their potential benefits for building trust, were used in the case of the US Centers for Disease Control and Prevention’s (CDC) communication response to the 2009 H1N1 pandemic.50 The CDC launched a massive social media communication campaign, using Facebook, YouTube, Twitter, podcasts, RSS feeds, and microblogs among other platforms. People were able to post their views and experiences on these platforms, even if they did not align with the CDC’s recommendations and science. Although this freedom did result in posts containing inaccurate information, these tended to be corrected quickly by the user community. Essentially, by not trying to control the discussion the CDC showed trust in the public and in turn built public trust in itself—evaluations showed public trust in the organisation rose substantially during the H1N1 response.46

Foster community based responses and ownership of initiatives

The ubiquitous nature of social media and their growing accessibility makes them a promising platform for new forms of community mobilisation and self-organising, including at local levels.46 Through its capacity to democratise participation, social media can open up the possibility of collective action that is horizontally networked rather than vertically controlled.51 For example, Community Action Networks (CANs) emerged during the covid-19 pandemic in South Africa5253 to organise community assistance through WhatsApp groups. The networks used WhatsApp groups to assess their communities’ needs, brainstorm what support could be provided, and coordinate who could volunteer to help. These WhatsApp groups expanded organically into a collective multimedia platform for community communication and mobilisation, including through Facebook pages and groups, use of videoconferencing platforms, and local TV and radio. These grassroots networks became a major force during the pandemic, identifying the most pressing problems and using local resources to respond to these through self-organising neighbourhood initiatives.53 This kind of initiative and others 4051 could inform the development of more bottom-up and community-led interventions for vaccination.

Conclusion

The prevailing narrative about social media and vaccine confidence arguably depicts an incomplete picture of the problem and minimises potential opportunities. Vaccine confidence is a complex phenomenon that reflects multiple dynamics and webs of influence—social, material, historical, political, along with knowledge about vaccines. We have suggested that some of the core characteristics of social media hold potential—still largely untapped—for targeting these more complex drivers of distrust in vaccines.

We are not suggesting that social media are the panacea to public distrust in vaccines. No single strategy is likely to have much traction for this complex problem.54 We also recognise the apprehensions of using social media for public health purposes, such as its potential to exacerbate the digital divide and inequities in healthcare access 37 or it being yet another technical response to a complex public health problem.55 We share these concerns but believe in the transformative potential of harnessing social media as part of a broad public health approach to promote vaccine confidence in all its complexity.

Key messages

  • Mistrust in vaccines is commonly assumed to arise mainly from limited or a lack of information, which can be redressed through education and awareness raising

  • Public health research from a critical social science perspective highlights that vaccine confidence is a complex phenomenon reflecting multiple dynamics and webs of influence—social, material, historical, and political

  • Critical social science research and community engagement in various African countries show that listening and dialogue, transparency, relationships, and community ownership and participation can help build public trust in vaccines

  • These insights could inform interventions using social media as part of a broad public health approach to promote vaccine confidence

Footnotes

  • Contributors and sources: The interdisciplinary author team is from sociology and psychology (SC), anthropology (DKM), health systems (CSW, PK, ET), vaccinology (ES, CSW, PK, MG), medicine (CSW, PK, ET, MG), and epidemiology (ES, CSW, PK, MG, ET). SC conceived and drafted the manuscript with inputs from all authors. All authors contributed to revising the manuscript and developing the list of references. All authors approved the final version. SC is guarantor.

  • Competing interests: We have read and understood BMJ policy on declaration of interests and have no interests to declare.

  • Provenance and peer review: Commissioned; not externally peer reviewed.

  • The article is part of collection that was proposed by the Advancing Health Online Initiative (AHO), a consortium of partners including Meta and MSD, and several non-profit collaborators (https://www.bmj.com/social-media-influencing-vaccination). Research articles were submitted following invitations by The BMJ and associated BMJ journals, after consideration by an internal BMJ committee. Non-research articles were independently commissioned by The BMJ with advice from Sander van der Linden, Alison Buttenheim, Briony Swire-Thompson, and Charles Shey Wiysonge. Peer review, editing, and decisions to publish articles were carried out by the respective BMJ journals. Emma Veitch was the editor.

This post was originally published on this site

Related
2020 © Zeen World News