The Health Equity Voice (THEV)

Rose Mary Nakame battled a brain tumor at an early age in context of a low socio-economic background and a culture that valued boys more than girls which motivated her to study a Bachelor of Science in Nursing, obtain an exchange study in Finland for Advanced Nursing and an Equity and Merit scholarship-MPH at The University of Manchester. This knowledge has been useful in her work as a frontline nurse, teaching in a rural nursing school and improving the efficiency and impact of REMI East Africa, an organization that she founded to address health inequities.

She is a recipient of the Mandela Washington Fellowship, first highly recommended award for the Manchester outstanding international engagement, finalist under the Recognizing Excellence Around Champions of Health (REACH) Awards and Atlantic fellowship for health Equity. For 5(1/2) years, Rose served on the board of Irise Institute of East Africa and rising chair it.

The burden that falls onto Uganda’s rural health workforce serving in under equipped facilities has often been neglected. However, its consequences have been made headlines in media, building public distrust, damaging the standing of the health profession and unknowingly raising the barriers to accessing quality healthcare instead of fixing the broken system to enable the poorest live healthy, dignified and productive lives.

The Health Equity voice project equips rural health workers with storytelling skills to advocate for the address of their challenges and highlights their best practices on a blog, curate them on social media thereby creating public discourse, building public trust and support.

“I know that the public looks down on us because they do not know the challenges we go through to avail them the health care and if they knew the challenges and how we navigate them, they would be supportive” …… Nurse Irene.

The burden that falls onto Uganda’s rural health workforce (1 medical person: 714 people) serving in under equipped facilities has often been neglected. However, its consequences have been made headlines in the media, building public distrust, damaging the standing of the health profession and unknowingly raising the barriers to accessing quality health care instead of fixing the broken system to benefit the 83% of the poorest population served by it. The VSO,2012 report highlighted that the absence of this absence of voice from those at the frontlines of serving the vulnerable and the poorest hinders understanding of what works best and does not enable the co-creation to address the existing challenges rendering the designed programs, policies and budgets unresponsive to the local needs, creating a wastage of resources.

Links:

https://www.bbc.co.uk/programmes/p07v8g3f

http://www.remieastafrica.org/index.php/health-equality-voice 

https://www.reachingthelastmile.com/reach-awards/finalists/rose-mary-nakame/ 

Listed among the global 50 innovators tackling the World's toughest challenges in the most innovative ways. Link: http://www.youthsolutions.report/read-the-2018-report 

The Health Equity Voice project involves grooming rural health workers into utilizing storytelling for advocacy and to highlight best practices in low resource settings. The stories are highlighted on a blog, used to engage stakeholders including policymakers and implementers culminating into better planning, equitable public health programming, budgeting, service delivery, training, better emergency preparedness, diplomacy, and innovation. In addition, through the curation of stories on social media, public support and trust is built.

“Advocacy cannot be sustained without grassroots advocates who can champion the strengthening of the health system for the last mile.”

We have been able to train 49 rural health workers into using storytelling for advocacy, collected stories from them which are profiled on the blog and have been curated via social media and have an interoperable link with the Nursing now (a campaign by World Health Organization and International Council of Nurses to increase nurses’ voices in policy formulation). In collaboration with civil society organizations, we advocated for the health worker migration policy leading to the Ministry of Health embarking on an assessment of its importance. In addition, contributed to designing of the award winning University of Manchester course on Sustainable Development goals.

Our project primarily serves the last mile health workers working with poorest populations in Uganda by amplifying their voices, ensuring that the emerging themes are factored into policy formulation, budgeting, programming and diplomacy through engagements with policy makers, civil society organizations, academia and development partners to ensure the address of the challenges that arise and highlight best practices in low resource settings.

We have last mile health workers WhatsApp group which informs the design, implementation, and evaluation of the project. And through the engagements on social media and their stories, we listen with the intent of connection either by curating to the public the gold medal stories to rebuild public trust or understand the emerging themes and galvanize action to the address of the challenges.

 For example, during this COVID-19 pandemic, the reiterated the lack of training to manage COVID-19 patients, we partnered up with the Critical Care Nurses Organization to train so far 41 health workers through zoom meetings and understanding the unaffordable internet costs, one of the partners met their costs. This was very helpful in supporting their knowledge needs and ensuring a more agile, efficient and equitable COVID-19 response.

Through the profiling of the stories collected on The Health Equity voice blog and curating them to the public via social media, we are able to highlight their ingenuity, adaptation and innovation to the challenges hindering the poorest from living healthy lives. And, our partnerships with civil society organizations and collaboration with other stakeholders support advocacy for the address of the challenges.

During Rose’s leadership of intern nurses at Hoima Regional referral hospital, she had to become an advocate for timely pay of health workers who had gone 3 months without pay and laid down their tools. The negotiations with policy makers and implementers made it clear that lack of a communication platform to highlight the plight of rural health workers to inform policy formulation, budgeting, academia and programming was becoming a contributor to mortalities recorded and damaging public trust in the health system.

Allowing this situation to continue would deny 83% of the poorest Ugandan population access to quality healthcare, increase their mortality and morbidity. And, as one with a lived experience of poverty, I understand how this can erode one’s dignity and leave them hopeless.

In 2017, I designed “The Health Equity Voice” Project, mobilized a team of volunteers to work on amplifying voices of those at the frontline of improving the health and lives of the poorest, awareness creation about the challenges to illicit the empathy and public support and sharing best practices can inspire others to tackle the issues using creative ways even amidst the scarce resources, leading to a more responsive, adaptive and resilient rural health system.

Elimination of disease has been defined as the decrease in incidence of disease to zero in a given location as a result of deliberate continued actions. Attaining disease elimination requires collection of timely and reliable data that can inform program design, surveillance and policy interventions but more so, increase efficiency, transparency, accountability and monitoring of health systems. And, when a strong and efficient health system exists, it facilitates the success of disease elimination.

Generating timely and reliable evidence in most African countries comes at an unaffordable cost. In addition, the skills needed to generate this evidence are still lacking and creating a vacuum of known effective health promotion/disease elimination strategies hindering the development of evidenced-based policies, adoption of innovations and improvement in service delivery. This is well exemplified by the continuous stockouts of medicines in some districts and expiry on shelves in others leading to wastage of monies in incineration, increase in disease resistance and burden.

However, stories have been deeply engraved in African culture and considered the most powerful tool of communication. They have been used to communicate ideas, inspire change, stimulate imagination, create awareness and elevate humanity which lie at the core of “The Health Equity” Voice project.

Rose Mary Nakame’s lived experience of poverty and its vicious cycle including bottlenecks in accessing quality health care motivated her to take on science courses, studying a Bachelor of Science in Nurse, obtaining an Equity and Merit scholarship at The University of Manchester to pursue the Master in Public Health.

She has over 8years of experience in Public Health; starting out as a last mile health worker to academia, research, founding and leading REMI East Africa, an organization that addresses health inequities and where “The Health Equity Voice” project falls and for the past 5 years been a member and later chair of board, Irise Institute of East Africa.

The stories from “The Health Equity Voice project” inform us of the challenges to address or strength to amplify and working with partners. For example in advocacy, we work with the Nursing now campaign, African Health Accountability platform and the Reproductive Maternal and Health Coalition to advance the issues. And, to support the knowledge needs of rural health workers; we work with SEED Global Health, Federation of African Medical Student’s association and Critical Care Nursing Association. In dissemination, we have partnered with US Office of Global Health Diplomacy, the Crown Price Court of Abu Dhabi through the Reaching the last Mile and the United Nations Sustainable Development Solutions Network. In academia, we have contributed to The University of Manchester Interdisciplinary learning college’s course on Sustainable Development Goals, University of Washington’s COVID-19 series and are affiliates to East Anglia University’s Storylab. 

When “The Health Equity voice” project was launching, I convinced the team that we should start with nearby rural health centers that would not incur us high indirect costs such as transport. And, as I  sought meetings  with the leaders  to gain permission to carry out the activities, I realized that I had lost 5 consecutive days of making return journeys as they needed bribes to allow us kick start.

This was very frustrating because the health workers in this particular setting had unique stories of carrying medicine boxes on their heads from the water shore to their health centers and highlighting them would shed light to last mile health challenges.

At this point, the strategy changed to working closely with the health workers serving in other rural facilities from planning, implementing and evaluation. This increased engagement thereby training 43 rural health workers, collecting and profiling their stories on a blog. This blog is recognized by the “Nursing now” campaign which is a partnership between the World Health Organization and the International Council of Nurses. And stories were used to inform the health worker migration policy and designing of the Sustainable Development Goals curriculum at The University of Manchester.

While head of intern nurses in Hoima Regional Referral Hospital, I inherited a problem of delayed payment of interns leading to strikes, patient neglect and increase in maternal mortality rate.

During my tenure, I worked on ways that could keep interns working happily in vicinity of the patient which was no easy task. I started out by offering pro bono financial literacy skills resulting in 4 interns setting up small scale agro-businesses, having meeting with duty bearers and interns to achieve these objectives; timely pay for interns, transparent communication among all parties and avail patients consistent quality health care

These meetings included negotiations to ensure a win-win situation for all parties, resilience, risk-taking, commitment, dedication, listening and team work to achieve the objectives resulting into a Ministry of health intern policy, yearly induction of interns. And, growing of the mentorship activity into the “Inspire My stethoscope” project which reached 550 nurses and midwives and REMI East Africa, the organization.

Dr. Peter Piot, Director, London School of Tropical Medicine and Hygiene notes that innovation in health does not necessarily mean the discovery or launch of new drugs, vaccines or applications but it is the finding of better ways to reach people by improving the quality, efficiency, sustainability, affordability of health care and disease prevention.

East African rural health workers working in under resourced and under equipped settings are each day finding new ways to deliver better health care to the poorest. These bright spots of ingenuity and innovation could be replicated if information about them is available, and accessible despite the lack of research skills and resources and challenges raised used to stimulate innovation, entrepreneurship, inform academia and advocacy for better policies, budgeting and diplomacy.

Stories have been deeply engraved in African culture and considered the most powerful tool of communication. And, by training rural health workers on how to harness this effective tool, they increase access to what works in low resource settings, build trust with the public and avail advocacy information to strengthen the health system.

“This project has been an enabler to publish what I have found helpful in delivering health care to the poorest – Ugandan rural health worker”

 A great example of how their voices mattered is when we partnered with 49 other organizations to raise the pitfalls of the World Bank’s Global Financing Facility’s financing to Uganda leading to new negotiations between World Bank and concerned stakeholders to a fairer financing agreement.

Link: https://www.wemos.nl/wp-content/uploads/2018/11/Joint-Open-Letter-to-the-GFF-by-Wemos-and-CSOs-05112018.pdf

Issue (s)

1. Lack of voices of frontline health workers in policy formulation, budgeting and programming
2. Distrust in the public rural health system
3. Limited access of timely, tailored and accessible information of what works in low resource settings

Long term Goal

Increase the utilization of storytelling by rural health workers in order to highlight their ingenuity, adaptation and persistent challenges in order to build public trust and strengthen the rural health system that serves majority of the poorest populations.

Outcomes

• Rural health workers utilization of storytelling to highlight best practices and challenges
• Public engagement on the emerging themes to restore public trust and facilitate co-creation

Outputs

• 300 Stories collected from rural health workers on the 6 building blocks of the health system representative of rural and hard to reach areas and used to inform budgeting, policy formulation, innovation and academia
• 300 Rural health workers trained on the utilization of storytelling to strengthen the rural health system
• Partnerships made to address the emerging issues
• Increased engagement of the public with the health workers building public trust

Assumptions

1. Cooperation from local leaders to allow the training to take place within the hospitals
2. Access to finance to participate in the advocacy engagements of relevant stakeholders
3. Continued limited access of what works in low resource settings weakening the rural health system
4. Continued existence of the partnerships and coalitions to collaboratively address the issues
5. Health workers continue sharing stories post the training

Entry point of reaching key audience

1. Working with Ministry of Health, Uganda
2. Partnering with the Reproductive Maternal and Child Health Coalition (RMNCAH) to engage policy makers and civil society organizations
3. Social media and radio engagement s with the public

Steps needed to make change happen

1. Training of health workers in storytelling
2. Collecting stories from the health workers, profiling and curating them
3. Analysis of emerging themes to engage relevant stakeholders and galvanize efforts to address the challenges

Key audience: Rural health workers

Currently: 210

In one year: 1,260

In five years: 12,600

Long term Goal: Increase the utilization of storytelling by rural health workers in order to highlight their ingenuity, adaptation and persistent challenges in order to build public trust and strengthen the rural health system that serves majority of the poorest populations.

Steps needed to make change happen

1. Training of health workers in storytelling
2. Collecting stories from the health workers, profiling and curating them
3. Analysis of emerging themes to engage relevant stakeholders and galvanize efforts to address the challenges

The Health Equity Voice project has deeply relied on a volunteer based model. This model has its strengths such increasing ownership but also comes with its pitfalls such as relying on volunteer availability to conduct activities or fore go some. It is going to be very crucial as we upscale to have a basic paid staff structure complemented by the volunteers in order to achieve the goals. Recruiting these paid staff requires additional resources and training to not only work as a team, understand the methodology and execute efficiently.

 In addition, we have realized that the lack of digital skills in majority of the health workers hinders their online participation in the storytelling and online engagement which has been evidenced by increased story collection during physical engagements. 

Lastly, a combination of the lack of digital skills and minimal resources have meant that we need to have a transport budget to be able to reach out to health workers working in hard to reach and very remote settings.

Human Resource and Transport for hard to reach and very remote areas: We intend to start an online shop of bags, and shirts made from African material by women of poorest households under their umbrella WEGCDA. The money that will be raised will meet the indirect costs of operation.

Digital skills: We plan to seek partnerships that can avail in-service digital literacy training to the rural health workers. And, this component will be availed together with our storytelling training to ensure pragmatic application of skills gained and in order for them to take advantage of the numerous free online training to advance their careers.

In service training of health workers to address their knowledge gaps: Critical Care Nurses Association and SEED Global Health

Influencing policy: RMNCAH, African Health Accountability Platform, Girls Not Brides

Academia: The University of Manchester, University of Washington, Seattle and George Washington University

Dissemination: The Pollination project, Federation of African Medical Students Association, Nursing now campaign, US Office of Global Health Diplomacy, and Reaching the last mile and United Nations Sustainable Development Solutions Network.