Awareness campaigns deal in real stories and real people — how that communication is handled says everything about an organisation's values. Get it wrong, and empathy curdles into exploitation. Get it right, and it becomes the foundation of trust between an institution and the people it serves.
Palesa Mokomele, Head of Community Engagement and Communication at DKMS Africa, has been helping grow the organisation's stem cell donor registry from 19 000 to more than 200 000 since 2021. In this Q&A, Mokomele talks about her work in community engagement and healthcare advocacy, explaining what it takes to build communication around consent, dignity and genuine listening.
You have spoken about the need for beneficiaries and community members to be part of the communication matrix, rather than an ancillary consideration after the fact. What does this require from communicators and how can they ensure they are listening to the people they represent?
It requires communicators to involve people from the beginning, rather than approaching them only when a campaign needs a quote, photograph, or personal story.
Patients and caregivers should help inform the language, context and focus of the communication. Their lived experiences often reveal practical realities that may not be visible from within an organisation.
Listening should be structured through direct conversations, feedback and ongoing engagement. It also means being willing to adjust the message according to what the patient or caregiver is comfortable sharing.
The people most affected by an issue should not simply appear in the communication; they should help shape it.
What questions should communications leaders be asking internally before they put their organisation behind a purpose-led message?
The first question should be whether the organisation's actions support the position it wants to take publicly. Communications leaders should ask:
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Have we consulted the people directly affected?
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Is the issue connected to our organisation's purpose and expertise?
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What practical action accompanies the message?
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Are our internal policies aligned with what we are saying publicly?
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Are we prepared to remain committed after the campaign or awareness period ends?
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Could the communication create unintended risks for the people involved?
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How will we measure impact beyond reach, engagement and media coverage?
Purpose-led communication should begin with accountability and action, rather than simply responding to a topical moment. Organisations should be able to demonstrate how their message connects to their work and what meaningful change they are prepared to support.
When communicating about issues such as illness and caregiving, there is a fine line between creating empathy and turning someone's vulnerability into content. What are the ethical considerations you think communications teams should be discussing before a story reaches the campaign stage?
The dignity and wellbeing of the individual must always take priority over the needs of the campaign.
Consent should be informed, voluntary and ongoing. Patients and caregivers should understand where their stories will appear, which details will be shared and whether journalists may contact them. They should also be able to change or withdraw their consent without fearing that this will affect the support they receive.
Communicators must distinguish between information a patient chooses to make public and confidential information held through the donor-search and transplant process.
The World Marrow Donor Association (WMDA) provides an important framework for this kind of work. Its standards guide organisations such as DKMS Africa on informed consent, data protection, medical confidentiality and the protection of donor and patient identities.
These standards are valuable because they reinforce that having access to sensitive information does not give a communications team permission to use it.
Before any story is published, teams should consider whether the information is necessary, whether it could expose the individual to stigma or unwanted attention, and whether the person is being represented with dignity and agency.
A patient or donor is never simply a campaign asset.
You've spoken about trust as something that determines whether people move from receiving information to participating. What are some of the communication behaviours that build or erode that trust when an organisation is talking about social issues?
Trust is built through honesty, accuracy, consistency and follow-through.
Organisations should communicate clearly about what they can offer, what they cannot guarantee and what people can realistically expect. This is particularly important in healthcare where donor searches, treatment and recovery can be complex and uncertain.
Trust is also strengthened when organisations use accessible language, respond to questions, protect personal information and continue engaging with people after the immediate campaign or public appeal has ended.
At DKMS Africa, patient communication is intended to reflect the full journey. With informed consent, post-transplant stories can offer credible hope to patients who are still waiting for a match and demonstrate that our commitment extends beyond donor recruitment to the broader patient journey.
Trust is eroded when organisations overpromise, disappear after a campaign, use people's vulnerability as an emotional device or communicate externally in ways that do not reflect their internal practices.
Trust is not established through one message. It is built through consistent behaviour that shows people their voices, privacy and experiences are valued.
Your career has taken you from government communications into community engagement and healthcare advocacy. How has this experience influenced the way you think about whose voice should be reflected in organisational communication?
My experience has taught me that organisational communication cannot be shaped only by people who hold formal titles or institutional authority.
Government communications taught me the importance of public accountability and the responsibility institutions have to communicate clearly with the people they serve. Community engagement showed me that lived experience is also a form of expertise.
Healthcare advocacy has strengthened this understanding. Patients, caregivers, healthcare professionals, community representatives and policymakers may all experience the same healthcare system differently. Effective communication should recognise what each perspective contributes.
This does not mean every message must include every voice. It means communicators should be deliberate about who informed the message, whose perspective may be missing and who could be affected by the way the issue is presented.
I see communication as a bridge between institutions and people.
Our role is not only to explain what an organisation is doing, but also to bring the experiences of patients, caregivers and communities into the rooms where organisational and public-policy decisions are made.
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*Image courtesy of contributor and Canva