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In healthcare and patient engagement, we frequently hear about the challenges patients face in obtaining accurate diagnosis and effective treatment. In Africa, limited disease awareness and lack of active patient involvement in care remain significant obstacles, unlike in countries such as the U.S. My personal experience with these barriers motivated me to establish a patient advocacy group in Kenya. In this article, I share my journey and key insights on advancing patient engagement in countries/ regions where the practice is still emerging.

Personal experience

My journey into patient engagement began in 2011 when I was diagnosed with Graves' hyperthyroidism shortly after my daughter’s birth. The struggle to obtain an accurate diagnosis and effective treatment forced me to rely on the internet for information. Years of misdiagnoses and ineffective treatments left me feeling alienated and misunderstood by healthcare professionals. My persistence eventually led me to the right doctor and a successful thyroidectomy, but the loss of a childhood friend to thyroid disease strengthened my resolve to prevent others from enduring similar hardships.

This mission led to the founding of the Thyroid Disease Awareness Kenya Foundation (TDAK), dedicated to bridging the gap between patients and the healthcare system. Through this work, I became a patient consultant, advocate, and engagement expert.

Initiating this journey has involved not only acquiring a deep understanding of the medical aspects of thyroid disease but also mastering the art of communicating complex health information in accessible and comprehensible ways to patients. I have also had to develop my skills in working with healthcare professionals, hospitals, policymakers, and the public.

Patient engagement challenges in Africa

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Meaningful patient involvement leads to more effective therapies, better healthcare services, and reduced systemic inefficiencies, and we are starting to see some progress towards achieving this in Africa. However, there are numerous challenges facing patient engagement professionals on this continent.

Patient engagement is a nascent discipline in Africa

In Africa, the field of patient engagement is still emerging and remains underserved, underrepresented, and largely unexplored. It is a nascent discipline that requires substantial effort to educate stakeholders, raise awareness, and advocate for patients' rights. Patients often lack knowledge of their rights and are excluded from decision-making, and advocacy efforts are grassroots-led and receive minimal government recognition or support. In contrast, many Western nations have integrated patient engagement into their healthcare systems, ensuring patient involvement in care decisions.

Resource constraints

In Africa, underfunded and overstretched healthcare systems prioritise immediate healthcare needs over patient engagement. Funding for patient advocacy is scarce, making it difficult to train advocates, scale initiatives, and implement policies and programs that prioritise patient centricity.

Navigating healthcare systems

Many African patients struggle with fragmented and inaccessible healthcare systems. Advocacy often involves guiding patients through these challenges and helping them understand their rights.

Lack of professional recognition

Although patient engagement and patient centricity have been adopted and embraced in many Western countries, the absence of systems and structures to formally recognise patient engagement professionals (PEPs) in Africa poses a substantial challenge. Many patient organisations leaders engage in this work without remuneration, driven solely by passion and resilience. Without formal structures to support them, many must balance advocacy with additional work commitments.

Spotlight on an African Patient Engagement Professional: Elizabeth Mutunga

The Alzheimer’s and Dementia Organization Kenya (ADOK) is led by Elizabeth Mutunga, a trained psychotherapist and HR practitioner whose father lived with Alzheimer’s disease for many years. The experience she and her family faced while caring for her father prompted her to seek a support platform for guidance, encouragement, and camaraderie with other caregivers. With no such group in existence, she created one, starting with just three caregivers who met fortnightly.

Elizabeth Mutunga, African Patient Engagement Professional and dementia expert. Photo courtesy of alzkenya.org.

This modest initiative has since grown into a fully-fledged non-governmental organisation, supported by international donors, Kenya’s Ministry of Health, and other local and global stakeholders. This backing has enabled ADOK to conduct extensive outreach programs across Kenya and the East African region. What’s more,

Elizabeth recently graduated from the University of Stirling with a Master’s degree in Dementia. However, despite these accomplishments, there remain no formal systems to ensure Elizabeth is adequately remunerated for her advocacy efforts, acknowledged for her impact, or recognised as a Patient Engagement Professional in her country or continent. As the International Society for Patient Engagement Professionals (ISPEP) looks to expand its wings across the globe, its representation in Africa will help ensure that PEPs like Elizabeth are fairly recognised and remunerated for their work.

10 Top Tips for PEPs in Africa and beyond

So what can PEPs do in places where patient engagement is still in its early stages?

Understand the local context
Intimate, “real world” experience is crucial in patient advocacy.
Start small but purposefully
Begin with focused projects that address specific needs.
Build relationships with key stakeholders
Collaborate with healthcare providers, policymakers, and advocacy groups to help create a sustainable impact.
Leverage storytelling and personal experience
Patient stories can be powerful tools for raising awareness of key issues, a vital step in driving systemic change.
Educate and empower patients
Providing patients with knowledge about their health and rights enhances self-efficacy and health literacy.
Establish support networks
Creating platforms for patients and caregivers to connect fosters support and valuable insights for improving engagement and education. Digital technologies can help expand the reach of such platforms and programs.
Seek professional development and mentorship opportunities and join international partnerships
Engaging in professional development and pursuing mentorship helps advocates overcome obstacles and ensure their strategies and activities remain relevant. Further, collaboration with global organisations helps foster connections and provides access to resources, training, and best practices. ISPEP provides an ideal platform for forming these professional relationships.
Advocate for policy inclusion
Pushing for patient engagement to be incorporated into national healthcare policies helps embed systemic change.
Be patient but persistent
Change takes time. Celebrating small victories keeps the momentum going.
Document and measure impact
Tracking outcomes helps demonstrate the effectiveness of patient engagement and attract funding for sustained advocacy.

How can other PEPs support those in Africa?

Partner with local organisations to share resources, funding, and best practices tailored to resource-limited settings.
Offer mentorship, training, and capacity-building support for advocates and healthcare workers. The ISPEP Hub provides an ideal platform for connecting with professionals who would benefit from or would like to contribute to this support.
Advocate internationally for investment in patient-centred healthcare initiatives in Africa.
Share ideas, strategies, and tools for overcoming barriers in marginalised communities by posting on the ISPEP Hub Discussion Area to widen reach and impact.
Include African voices in global discussions on patient engagement.
Prioritise long-term impact and sustainability when designing programmes for African communities.

By adopting collaborative and culturally sensitive practices, patient engagement professionals worldwide can empower African advocates, ultimately improving healthcare outcomes and health equity.

Conclusion

Patient engagement is essential for improving healthcare in Kenya and across Africa. My mission remains to amplify patient voices, advocate for their rights, and ensure patient engagement becomes an integral part of Kenya’s healthcare system. Only through sustained efforts and global collaboration can we truly transform healthcare for patients across Africa; I therefore call upon the ISPEP community to consider how we can come together to ensure the benefits of patient engagement are available to all, regardless of geographic location or cultural context.

Sarah's advocacy organisation (TDAK) is one of the first recipients of the ISPEP Patient Organisation Bursary; this provides patient advocates with the opportunity to receive free ISPEP membership in exchange for sharing their expertise through case studies, expert articles, and more.

To learn more about Sarah's advocacy work in Africa, sign up to the ISPEP Hub where she will be sharing her expertise over the coming months.

To learn more about the ISPEP PO Bursary, read our latest announcement or send us an email via the Hub.

An African Perspective on Patient Engagement