Part I- To Get Inspired, Build Empathy into Your Project Plan

~Written by Lauren Spigel, Monitoring and Evaluation Coordinator (Contact: lauren.spigel@vaxtrac.com; Twitter: @vaxtrac)

Also published on VaxTrac blog

Build Empathy First
In our first blog post about human centered design, we talked about building empathy for design thinking. But what does “empathy” really mean, and how does it translate into research methodology?

To have empathy is to understand another’s perspective. If your goal is to build empathy with the community you’re designing for, it’s important to budget time, space and resources to talk to a variety of project stakeholders about the challenge you’d like to solve before the project starts. While it’s difficult to convince donors to spend money on an extended R&D phase, giving communities a voice at the onset of your project can save your organization time and money by allowing stakeholders to voice their opinions and be active participants in the design process.

The methods we use to build empathy are reminiscent of the research methods found in academic settings. Human centered design is especially akin to the philosophy of community based participatory research (CBPR), which also recognizes that when given a voice, communities are best equipped to identify sustainable solutions to challenges they face. Like CBPR and more traditional qualitative research methods, human centered design relies on interviews, focus groups, observations, surveys, card sorts, among other interactive methods, such as role plays, immersion and community mapping to elicit feedback from stakeholders.

Let’s dive into the case example of how we are building empathy with health workers in Nepal to improve our user interface and workflow.

The Problem
The clinics we work with in Nepal are fundamentally different than the clinics we work with in Benin. In Benin, the clinics are urban and busy. There are vaccination sessions almost every day. Caregivers bring their children to the clinics for vaccinations.

By contrast, the clinics we work with in Nepal are rural. The population is dispersed. As a result, vaccinations only happen a few days a month. There may be one or two sessions that take place at the main clinic, but there are usually also a number of outreach sessions, in which the health workers walk several hours to sub-health posts within their catchment areas. Since the population is small, only a few children come to each session.

Building Empathy through Brainstorming and Workflow Cards
There are a number of methods we could use to get into the mindset of the health worker. The key is to remember that health workers are the experts. They understand their job better than anyone else. Our job is to listen, build empathy for what they experience in their jobs and translate that into our software design.

We are starting with the goal of understanding health workers’ workflows in different situations. In other words, what do health workers do to prepare for a vaccination session? What happens during a session? What happens after?

Our DC-based team started by brainstorming objects, people and actions involved in a vaccination session. We scoured the internet for images to represent everything that we came up with. We put together sample workflow cards and brought it to our project partners in Nepal.

View fullsize

Draft Workflow Cards (Source: vaxtrac.com)

Seeing the sample workflow cards inspired our in-country partners Amakomaya to continue the brainstorm. They looked at our cards and told us what images worked and which images did not convey the right meaning. They grabbed a marker and started brainstorming their own list. We sketched images together.

We designed an interactive activity with health workers to use the workflow cards to get a better understanding of the different workflows they use during vaccination sessions. We are currently working to add Amakomaya’s feedback into an updated version of the workflow cards, which we will test out with a group of health workers early this year.
Using cards with simple images on them is a great way to get health workers talking about how they do their work. Cards are tangible objects that health workers can put in their hands and arrange in different ways. It gives the group a visual to refer to when someone has a question. It allows our team and health workers to identify gaps in the work flow as well as pain points.

We hope that by understanding current workflows and processes, we can understand the challenges that health workers face in their daily jobs and iterate our software so that it improves their workflow.

Check out our next post in our series about human centered design next week, where we’ll give examples of how we’ve been prototyping a monitoring and evaluation dashboard with our team in Benin.
________________________________________

To learn more about incorporating design thinking into your projects, contact Lauren at lauren.spigel@vaxtrac.com or check out IDEO’s resources

Keeping the Spotlight on Neglected Tropical Diseases (NTDS)

-Written by Adenike Onagoruwa, PhD (Contact: adenike.onagoruwa@gmail.com)

Neglected tropical diseases (NTDs) are a group of diseases with different causative pathogens that largely affect poor and marginalized populations in low-resource settings and have profound, intergenerational effects on human health and socioeconomic development. The WHO has prioritized 17 NTDs that are endemic in 149 countries, of which some such as dengue, Chagas disease, and leishmaniasis are epidemic-prone.

NTDs can impede physical and cognitive development, prevent children from pursuing education, frequently contribute to maternal and child morbidity and mortality, and are a cause of physical disabilities and stigma that can make it difficult to earn a livelihood. Largely eliminated in developed, high-resource countries and frequently neglected in favor of better-known global public-health issues, these preventable and relatively inexpensive to treat diseases put at peril the lives of more than a billion people worldwide, including half a billion children. Several reasons have been postulated to explain the neglect of these diseases; an underestimation of their contribution to mortality due to the asymptomatism and lengthy incubation period that is characteristic of many of the diseases, a greater focus on HIV, malaria and TB because of their higher mortality, and a lack of interest in developing (non-profitable) treatments by pharmaceutical companies.

Progress has been made in recent times in combating these diseases and several international measures have been taken. Resolution WHA66.12 adopted at the sixty-sixth World Health Assembly in May 2013 highlighted strategies necessary to accelerate the work to overcome the global impact of neglected tropical diseases. Previously in January 2012 at the “London Declaration”, representatives of governments, pharmaceutical companies and donor organizations convened to make commitments to control or eliminate at least 10 of these diseases by 2020. They proposed a public-private collaboration to ensure the supply of necessary drugs, improve drug access, advance R&D, provide endemic countries with funding and to continue identifying remaining gaps.

So far, the coalition has made progress with delivering on their promises:

Pharmaceutical Companies - In 2013, drug companies met 100% of drug requests, donating more than 1billion treatments. On the R&D front, clinical trials for some NTDs have been started. In addition, several drug companies have enabled access to their compound libraries.

Governments - Compared to 37 in 2011, 55 countries requested drug donations at the end of 2012. Also, over 70 countries have developed national NTD plans. Within a year of the Declaration, Oman went from endemic trachoma to elimination and by 2014, Colombia eliminated onchocerciasis.

Donors - NTDs have become more visible on the development and aid agenda, especially with the £245 million earmarked in 2012 by DFID for NTD programs. Other donors have since followed suit.

However, despite these strides, challenges remain as treatments are not reaching everyone in need. Although 700 million people received mass drug administration (MDA) for one or more NTDs in 2012, only 36% of people in need worldwide received all the drugs they needed. There’s also the anticipated challenge of environmental and climate change on NTDs; with dengue being identified as a disease of the future due to increased urbanization and changes in temperature, rainfall and humidity.

The spotlight needs to remain on NTDs and their contributions to ill-health and poverty for efforts to be sustained. 

To sustain these efforts, greater advocacy has to be made for integrating NTD control into other community and even national level programming, without losing them in the crowd. Some anthelminthic drugs for preventive chemotherapy are on the WHO Model List of Essential Medicines and their distribution has been effective and economical. However, to succeed at NTD elimination, we have to look beyond mass drug administration to the removal of the primary risk factors for NTDs (poverty and exposure) by ensuring access to clean water and basic sanitation, improving vector control, integrating NTDs into poverty reduction schemes and vice versa, and building stronger, equitable health systems in endemic areas. There needs to be a consensus as to how to ensure this. At present, it seems there is a gap between elimination objectives and how to incorporate them into other health and development initiatives such as water and sanitation, nutrition and education programs. It has long been established that helminth parasite infection contributes to anemia and malnutrition in children. The presence of other protozoan, bacterial and viral diseases also contribute to school absenteeism. Guinea worm disease (dracunculiasis) can be recurrent when there is no access to safe drinking water.

There is also a need to maintain a surveillance and information system for NTDs in light of increasing migration and displacements. Another way to ensure that the spotlight is kept on NTDs is research that provides evidence of interactions and co-infections with other diseases. For example, epidemiological studies from sub-Saharan Africa have shown that genital infection with Schistosoma haematobium may increase the risk for HIV infection in young women (Mbah et al, 2013). Understanding that neglected diseases can make the “big three” diseases (malaria, HIV and tuberculosis) more deadly and can undermine the gains that have been made in health, nutrition and education is important (Hotez et al, 2006).

Erroneous overstating of the progress made in controlling and eliminating NTDs can have a detrimental effect on funding and public perceptions of their importance. Thus, there is a need for increased synergy between stakeholders. Achievements in polio eradication do not equal achievements in human African trypanosomiasis eradication. While some NTDs can be managed with specific drugs, some such as dengue do not have a specific drug. Therefore, while keeping the spotlight on NTDs collectively, it is important to emphasize their diversity and to also keep in mind the subgroup of NTDs categorized as emerging or reemerging infectious diseases, which are deemed a serious threat and have not been adequately examined in terms of their unique risk characteristics (Mockey et al, 2014).

Lastly, it is important to keep the heat on NTDs in the UN’s post-2015 sustainable development agenda by advocating that proposed goals support efforts to monitor, control and eliminate NTDs. As highlighted by the Ebola crisis, strengthening health systems is paramount. Nevertheless, the future looks optimistic regarding NTDs. Encouraging is the inclusion of neglected and poverty-related diseases on the agenda of the 2015 G7 Summit, which will be held in Germany in June.

References:

World Health Organization. Neglected tropical diseases: becoming less neglected [editorial]. The Lancet. 2014; 383: 1269

Holmes, Peter. "Neglected tropical diseases in the post-2015 health agenda." The Lancet 383.9931 (2014): 1803.

Feasey, Nick, et al. "Neglected tropical diseases." British medical bulletin 93.1 (2010): 179-200.

World Health Organization. Neglected tropical diseases. http://www.who.int/neglected_diseases/diseases/en/                              

Fenwick, Alan OBE. “The Politics of Expanding Control of NTDs.”  A Global Village Issue 7. http://www.aglobalvillage.org/journal/issue7/globalhealth/ntds/

Mbah, Martial L. Ndeffo, et al. "Cost-effectiveness of a community-based intervention for reducing the transmission of Schistosoma haematobium and HIV in Africa." Proceedings of the National Academy of Sciences 110.19 (2013): 7952-7957.

Hotez, Peter J., et al. "Incorporating a rapid-impact package for neglected tropical diseases with programs for HIV/AIDS, tuberculosis, and malaria." PLoS medicine 3.5 (2006): e102.

Mackey, Tim K., et al. "Emerging and Reemerging Neglected Tropical Diseases: a Review of Key Characteristics, Risk Factors, and the Policy and Innovation Environment." Clinical microbiology reviews 27.4 (2014): 949-979.

G7 Summit Agenda. http://www.g7germany.de/Webs/G7/EN/G7-Gipfel_en/Agenda_en/agenda_node.html

World Health Organization. Investing to overcome the global impact of neglected tropical diseases: third WHO report on neglected diseases 2015. 

Politics and Medicine

~Written by Mike Emmerich, Specialist Emergency Med & ERT Africa Consultant (Contact: mike@nexusmedical.co.za) 

https://twitter.com/MikeEmmerich

"Medicine is a social science, and politics is nothing else but medicine on a large scale"—Rudolf Virchow

Politics is defined as "organised human behaviour", thus we can postulate that Medicine is micro managed organised human behaviour, at times right down to the molecular level. If we examine the Ebola outbreak/s (globally) and how it is being managed on a macro (politics) and micro scale (medicine) we can begin to see the cracks in the system, and hopefully then move to addressing these cracks, before they begin yawning chasms that are not repairable.

The region (Liberia, Sierra Leone and Guinea) has had success (we could add Nigeria and Senegal to the successes) and failures in both areas. Neither is Spain and the USA exempt from this analysis as can be noted from the various press releases (government and medical) over the past few months.

Since the first outbreaks in 1976 (Sudan and The DRC) till the current one in West Africa; care has generally been palliative and symptomatic, questions have often been asked during this period; What of a vaccine and/or other means of treating the infected patients? There was a report in the British Sunday Times (12/10/14), cited a Cambridge University zoologist as saying that “it is quite possible to design a vaccine against this disease” but reported that applications to conduct further research on Ebola were rebuffed because “nobody has been willing to spend the twenty million pounds or so needed to get vaccines through trial and production”. Globally this has been one of the failures of the pharmaceutical companies, and most probably even the WHO, for not pushing harder over the years to get this in motion.

In her 1994 book /The Coming Plague: Newly Emerging Diseases in a World Out of Balance http://lauriegarrett.com/#item=the-coming-plague, //Laurie Garrett warned that there are more than 21 million people on earth “living under conditions ideal for microbial emergence.” http://www.independent.co.uk/arts-entertainment/science-mutating-microbes-1601604.html Garrett when on to win the Pulitzer Prize in 1996 for reporting on Ebola. In 1995 Joshua Lederberg, the American molecular biologist said: "The world is just one village. Our tolerance of disease in any place is at our own peril. Are we better off today than we were a century ago? In most respects, we're worse off. We have been neglectful of the microbes, and that is a recurring theme that is coming back to haunt us."

Jump forward to the 23^rd of September 2014, US President Obama issued an unprecedented ‘Presidential Memorandum on civil society http://www.whitehouse.gov/the-press-office/2014/09/23/presidential-memorandum-civil-society’ recognising that: Through civil society, citizens come together to hold their leaders accountable and address challenges that governments cannot tackle alone. Civil society organisations…often drive innovations and develop new ideas and approaches to solve social, economic, and political problems that governments can apply on a larger scale./

If we look at the current crises in West Africa civic leaders are what is missing, hence the inability to track and trace potential infected persons, motivate communities to change risky behaviours (handing of the deceased), agitate with government to create better health care systems, this all adds fuel to the fire of the current epidemic.

Have we listened and learnt as governments, NGO's and Multinational Pharmacare companies since then?

Despite Medical Advances, Millions Are Dying, this is a banner from 1996, not 2014! from the WHO, which was "declaring a global crisis and warning that no country is safe from infectious diseases, the World Health Organization says in a new report that diseases such as AIDS, Ebola, Hanta, Mad Cow, tuberculosis, etc., killed more than 17 MILLION people worldwide last year”.

As Laurie Garrett wrote in her the closing section of her book, The Coming Plague, /“In the end, it seems that American journalist I.F. Stone was right when he said, ‘Either we learn to live together or we die together.’ While the human race battles itself, fighting over ever more crowded turf and scarcer resources, the advantage moves to the microbes’ court. They are our predators, and they will be victorious if we, Homo sapiens, do not learn how to live in a rational global village that affords the microbes few opportunities. It’s either that or we brace ourselves for the coming plague.” Time is short.

The Ebola outbreak in West Africa is “unquestionably the most severe acute public health emergency in modern times,” Dr. Margaret Chan, the director general of the World Health Organization, said Monday 20/10/2014). We do seem to be going in circles... circa 1995.. have we learnt nothing from history.

Sooner or later we learn to throw the past away History will teach us nothing ~Sting – Musician, singer-songwriter

Where have all the people gone, long time passing? Where have all the people gone, long time ago? Where have all the people gone? Gone to graveyards, everyone. Oh, when will they ever learn? Oh, when will they ever learn? ~Pete Seeger - American folk singer and activist