The Forgotten Health Inequality: Languages and Medical Information

Health inequalities and disparities have plagued this fragile earth since the beginning of unprecedented medical advances, the wealth divide, and the transition from agricultural economies to industrialized states. These health inequalities can range from lack of access to diagnosing technology, unaffordable medications that treat ubiquitous ailments, and distribution barriers that cause a shortage of preventive tools and drugs. Each one of these entities cause an immense amount of suffering for both health care providers, who are required to overcome the barriers, and, for those who are directly afflicted – patients and their families. In addition to these aforementioned health inequalities, the distribution of medical information is directly affected by another concealed yet detrimental form of disparity: the lack of diversity within the languages it is presented in.

Those who inherently speak English won’t face the same barriers as a rural Brazilian physician being unable to fully comprehend English specific instructions for a novel diagnosing tool for the Zika Virus. Nor will those inhabiting anglophone countries endure the same struggle of a Burmese pharmacist who isn’t able to utilize the pharmacokinetic data from a recently approved medication for colon cancer. The fact that information in English related to lifestyle changes for coronary heart disease might not be clear to some community health workers may not be realized from those hailing from the developed world where English is commonly spoken. Treatment guidelines, publications in prominent internationally renowned journals, medication inserts, and countless other resources are typically exclusively published in the English language – creating an insurmountable barrier for those having little access to an English medical education. While having a universal language like English as a connecting tool for the international health community has several benefits, this encompasses a little more than a billion fluent/semi-fluent English-speaking individuals on this earth: leaving about 6 billion humans with little or without access to this rich collection of health information. This language barrier for the majority of humanity amplifies the problems with the quality of care a health care provider is able to administer when also considering other health disparities like lack of access to technology and medications.

This disparity infects and disrupts many facets of the global health communities desire to truly empower local health care professionals and create sustainable public health care institutions. Although the leading global health entity, the World Health Organization (WHO), has attempted to tackle this disparity and expand its impact through diversifying its official languages, it still leaves half of the world population without access in their native tongue. The official languages of the WHO include Arabic (242 million native speakers), Chinese (1197 million), English (335 million), French (76 million), Russian (16 million), and Spanish (399 million) which totals to be only approximately 2.4 billion people. Furthermore, even with these six official languages, only WHO official documents are translated into the six languages while technical reports, guidelines and even the majority of the website is strictly in the English language. Besides WHO and as previously mentioned, the venues novel information is presented in like journals/guidelines is inaccessible to the great majority of health care professionals attempting to provide evidence-based care for their patients. A study published in Deutsches Ärzteblatt International in 2008 revealed that the amount of English-only journals in Medline has risen to 89% with roughly 9/10 new journals with Medline are in the English language. In addition, of 103 journals that are ranked and listed based on frequency of being cited, only 13 are not written (entirely or primarily) in English. This remote information can lead to situations where proper treatment guidelines are not followed causing morbidity or mortality, a lack of awareness of a necessary change within a hospital system, and other negative events that prevents local health leaders from taking charge of their community’s health and creating maintainable interventions.

Although making this medical information accessible to a superior majority of humanity is a difficult task due to lack of awareness, cultural aspects in languages, funding, and human resources, several programs have been recently developed throughout the world to begin addressing this health inequality with the assistance of WHO and political will:

    • In 2009, King Saud bin Abdulaziz University of Health Sciences in Saudi Arabia conducted a study that revealed that just over 4% of all Arabic health information websites met international quality standards. With this data being brought forth, the WHO’s Global Arabic Program was established to disseminate the work of WHO through Arabic publications, make reliable and current health information and research outcomes available in Arabic, and establish networks and knowledge communities in Arabic translation, terminology and publishing. In addition to this WHO program, an establishment of an Arabic health information foundation was created to govern and accredit Arabic health websites and an Arabic health encyclopedia
    • In 2012, WHO established a program, called the WHO Moscow documentation centre, which was funded by the Russian government to increase the number of technical WHO publications in Russian, such as clinical guidelines, and to establish a mechanism for consulting Russian-speaking public health experts on which publications they needed most. In order to ensure proper translation and clinical effectiveness, Russian experts are also invited to review the Russian publications before being revealed. This has directly empowered local health care providers and has provided a sustainable foundation for future Russian health dissemination success.  
  • In 2005, WHO established the ePORTUGUESe program to increase access to health information in Portuguese as part of a collaboration with Angola, Brazil, Cabo Verde, Guinea Bissau, Mozambique, Portugal, Sao Tome & Principe and Timor-Leste. This has allowed each country to develop their own specific health information library to meet specific needs for their populations. This platform can be accessed by anyone with an internet connection, giving health care providers a venue to improve patient care.

These are promising starts to addressing the language barriers that affect health care providers each day while caring for their patients. However, a continued devotion for assisting Khmer-speaking midwives in rural Cambodia utilizing a new birth spacing method, Creole-speaking pharmacists in Haiti checking for drug interactions between coumadin and levofloxacin, and Portuguese-speaking pediatricians in Mozambique deciding what dose of a powerful antibiotic to give needs to be followed through with to honor the global health’s community commitment to each other. While these examples serve as templates for success, an increase in awareness must be brought to the attention of heads of states and health leaders to ensure this health inequality is properly addressed. International health journals have the obligation to better structure their publications in order to make the information more language accessible; while local journals need to promote publications in the residential language to improve the provided health care in the area. The empowerment of public and private health care professionals is vital to the success of their country’s health, and overcoming the medical language barrier is the first step to achieving this.

The next big thing in global health innovation? A little less innovation, a little more implementation

A post like this should come with the qualification that I am no luddite when it comes to technology and innovation in global health. Quite the opposite actually. I have dedicated my entire career to championing ideas. Whether that was working in academic research evaluating new ways of helping people with chronic diseases live well or researching the technology and innovation pipeline to help healthcare organizations make decisions on what technologies and innovations to invest in; I have been and will continue to be a health technology and innovation advocate (and when I talk about innovation, I’m not just talking about clinical and biological technology or information and communication technology but more broadly about new programs, interventions, etc).

Five years ago I embarked on a new career path in global health which transformed the way I now think of innovation. One of my first projects was to help a local partner organization implement a logistics management information system to manage their post-rape care medication inventory. Since then, I have helped our partners through the process of implementing other technologies and in that short time, I learned the many pain points of implementing innovations.

When you have spent a good part of your career as I did working in controlled research environments where the protocol is often laid out months ahead of time with little room for deviance and with study participants who are often given incentives to participate, working on the last mile problem required a skill set refresh and a change in the way I viewed the innovation pathway. Whether it is learning how to integrate an innovation into a user’s workflow; getting users to trust you enough to tell you when something is just not working for them; finding out how to get innovations to stick; making mistakes and reiterating; using real-time data to enable feedback loops; understanding (and dealing with) organizational politics and leadership; mapping out relationships, etc. – graduate training in public health does very little to prepare you for the trial by error approach required for these undertakings. Researching and evaluating is very different from implementing. So many of us in this field spend much of our time working on research studies and programs based on the models and theories we’ve learned in school that we very rarely think closely about whether or not the studies or programs we work on are scalable, sustainable, or even ethical.

I recently attended a panel at Stanford consisting primarily of philanthropic organizations discussing how those of us working in the social sector and those of us supporting the work need to rethink innovation in terms of scale. One of the things that struck me during the discussion was that when it came to what metrics we use to define success we’re often talking about success on a small scale.  And too often they’re developed with the mindset of pleasing the donor or funder. When we think success metrics, we usually talk about some quantitative statistic that goes something like this: X% reduced morbidity or mortality in our sample size of N. At the end of the study or funding period, we leave the site, taking with us our intervention. We then go on to write a paper about it, submit it crossing our fingers it gets accepted in a high impact journal, we publish it, we present our ideas at conferences. We then call it a success and move onto our next grant.

While this is often the gold standard of success for academics and should still remain an important part of the innovation pathway, there are parts of this road to innovation success that are concerning, especially in the low-resource settings we work in. Firstly, is it ethical to put in an innovation into a site and then remove the intervention once the study period is over if we know it has helped them? Would the site be even able to afford the innovation once it passes the research phase? Secondly, is it enough to define the success of an innovation by saying the intervention did what we wanted it to do? After all, I’m pretty sure a company like Facebook didn’t call themselves a success after running a small study of 250 users that found that everyone liked the product and it changed their lives. They are successful because they have 1.94 billion daily active users worldwide (scale) and have been around for 14 years (sustainability) and they have changed the way we connect with others.

Dear global health colleagues, we have an enormous task at hand. One that requires us to roll up our sleeves and stop thinking small and start thinking big. Let’s end this epidemic of health technology pilotitis and start innovating in the implementation space. Let’s start thinking about ways of innovating outside of the academic space and in real-world settings with real-world obstacles. Implementing innovations demands collaboration so let’s also make sure that we influence those around us. We need to change the conversation on impact and start asking our colleagues and the organizations that support our work to start thinking about the long game. From there we need to make it easier to decide which technologies and innovations to adopt. Let’s also not forget about training our next generation of public health professionals to focus on creating true impact by teaching effective implementation in schools.

Implementation work is incredibly unsexy and a risky investment but needs to be the next big thing in global health as its value proposition is substantial. It is of notable importance when the future of funding for global health is becoming more uncertain. We need now more than ever to deliver long-lasting solutions, not just short-term fixes.

——————

A study looking at the proportion of children’s health grants funded by the US National Institutes of Health and the Bill and Melinda Gates Foundation found that 97% of grants were for developing new technologies and only 3% for improving delivery and use of existing technologies. Additionally, they found that new technologies would only reduce child mortality by 22% compared to 63% if existing technologies were fully utilized.

Although this study looked only at children’s health grants, the implementation gap can be found universally throughout global health. Learn more about how to bridge the “3/97” gap:

 

Health Literacy in the Viral Media Age

October is Health Literacy Month. And even though we only have a few days left in the month, I thought squeezing in a communications related post would be a fitting first blog post for the newest addition to the Communications Committee.

According to the World Health Organization, health literacy is defined as “the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health. Health literacy means more than being able to read pamphlets and successfully make appointments. By improving people’s access to health information and their capacity to use it effectively, health literacy is critical to empowerment.”

With health literacy playing a critical role in empowering individuals to make positive health choices, it should come as no surprise then that low levels of health literacy are associated with poor health outcomes. As such, it is our responsibility as public health professionals to promote health literacy by ensuring that the health information we disseminate is accurate, accessible, and actionable. In many ways we are already experts at this, from presenting information either orally or through pictures in low literacy settings to adapting messaging to the local culture. We understand the value of delivering contextually relevant health information.

Although many individuals still rely on health professionals for trusted health information, we cannot ignore the influence of communities on health literacy and in particular the rising role of digital communities. Digital communities have helped individuals with similar health concerns share information and support each other and have enabled the growth of viral media campaigns that raise awareness on health topics and reinforce key health messages. And while digital communities have certainly helped advance health literacy by making information more readily accessible, they have also had a detrimental effect.

In the viral media age, inaccurate health information can easily diffuse to a large number of people at lightning speed in digital communities. On top of that, social networks yield incredible power in influencing health behaviors even while taking into account individual characteristics such as income and education. This combination of factors should raise some alarms.

A recent article in The Atlantic discusses the challenges created by the spread of health misinformation and criticism in digital communities during epidemics. From the 2014 measles scare in Vietnam to SARS in China example after example demonstrates the potential harms of digital communities. Whether through exacerbating individual fears or creating mistrust between health professionals and the public, digital communities can negatively impact health literacy.

Although the author notes this is most evident in the Asia Pacific region, where the confluence of Internet users, smartphones, and infectious diseases has created the perfect storm, the problem of health misinformation among digital communities isn’t limited to epidemics or geography. The problem of health misinformation exists anywhere the Internet does. It is a problem that isn’t going away anytime soon and will only continue to grow. In 2015, over 3 billion people worldwide were using the Internet compared to 738 million in 2000. Of those users, 2 billion live in developing countries compared to only 100 million in 2000.

Projects focused on increasing global Internet access, like Facebook’s Internet.org which has brought free basic mobile Internet service to over 25 million people from India to Zambia, are gaining traction. In addition, data and mobile phones are becoming more affordable. These factors are driving the ubiquity of the Internet. Thus, it is imperative that we think about ways to limit the spread of health misinformation by staying ahead of the conversation in the days, months, and years ahead of us.

As we think about how to accomplish this, here are a few ideas to start with:

Public Health’s “Benevolent Dictator”: Is Gates ruling us, or are we just ruled by money?

Last week, Laura Freschi and Alanna Shaikh published a piece in Alliance magazine that raised some interesting and thought-provoking question about the role of the Gates Foundation in setting the global health agenda.  They conclude that Gates is becoming a “public health dictator” because of his financial resources and the power and influence that come as a result.  They are, of course, not the first to complain about Gates’s focus on technological solutions to global health challenges.  Some of the most recent grumblings were in response to the Foundation’s “reinvent the toilet” campaign this year, but similar concerns have been voiced for years.  The Foundation places too much emphasis on technological innovation and “quick fixes”; their undue influence diverts funding from other priorities; their goals are not realistic.  These are all valid concerns which deserve to be voiced (heck, we have already written about it here), particularly in a field where nearly everyone has a different opinion on how problems should be solved.

But a dictator?

Bill Gates.
A dictator? Nah. Look at that face.
The Gates Foundation is directed by the priorities of Bill Gates, an entrepreneur who made obscenely large piles of money and who now wants to use some of it to make the world better.  Those piles are accomplishing just that by funding the initiatives that he likes, thinks are important, and/or believes will work.  After all, Gates made his money through technological innovations, so it is perfectly logical that the same types of ideas would be close to his heart – and, to be fair, it is his money.  It is also fair to criticize those initiatives, particularly if the interventions are ineffective or do more harm than good.

But now pundits are demanding accountability from the Foundation, calling on it to justify what it does:

If expensive polio and malaria eradication efforts, pursued not just by Gates but by the entire global health community at Gates’ urging, fail, to whom will
Gates be accountable for that failure?

We demand accountability from our governments because they spend our money – we have the right to demand that our tax dollars be used effectively.  But why, exactly, should Gates be accountable to anyone for wasting his own money?  More importantly, why would the “entire global health community” do something just because he told us to?

Dictators are people who arbitrarily enforce laws, throw people in jail for criticizing them, and deny their citizens free and fair elections.  Gates does not punish anyone whose global health solutions don’t appeal to him – he just doesn’t give them money.  He never lead any kind of “global health coup” or insist that we all adhere to his development philosophy.  Yes, the Foundation has lots of money, and would-be philanthropist who wants to launch his NGO would treat Gates like a god if he ever saw him on the street – but that is precisely the point: he has undue influence because we give it to him.  To paint Gates as a “global health dictator” because causes are prioritized based on what will get Gates Foundation funding villifies the wrong party.  What does it say about us as a body of professionals if we allow ourselves to be led by the nose by the guy with the most money?

The Economist raised another interesting point when it examined the same debate back in 2008:

At least in part, the gripes against the Gates Foundation are the churlish growls of a jealous crowd of bureaucrats and labourers at less influential charities. Some people at the WHO…openly worry that the foundation is setting up a new power centre that may rival their organisation’s authority. Such conspiracy theorists point to the foundation’s recent grant of over $100m to the University of Washington to evaluate health treatments and monitor national health systems—jobs supposed to be done by the UN agency.

Therein lies an irony. The WHO, one of whose captains now calls the Gates Foundation monopolistic, used itself to hold a monopoly in the fight against malaria, and it did a lousy job as a result.

I do think Shaikh and Freschi (and also Tom Paulson of Humanosphere) are on to something when they question the Foundation’s giving money to media organizations to increase coverage of global health topics.

Among the grantees is a growing list of media outlets including the Guardian newspaper (UK), ABC, PBS and the BBC – all to underwrite coverage of global health issues. While these grants all came with assurances of editorial independence, it’s hard to believe that such partnerships won’t influence the nature of the coverage in some way.

Even if it is objective, it never looks good when you fund your own media coverage.  Somebody probably should have thought that one through.

At any rate, the debate about what Gates is doing (and what he should be doing) with his money will undoubtedly rage for as long as he has money.  But if we believe that the Gates Foundation is distorting global health priorities because of its purchasing power, then we need to take a long, hard look at how we define our priorities.

Addendum: The Circle of Death (by PowerPoint)

As I mentioned in my first day post, I was delighted when I received a flash drive along with my registration materials that contained speaker bios, PowerPoint slides for each panelist’s talk, and background materials for some presentations. One advantage was that I was able to follow each panelist’s presentation on my laptop instead of furiously taking notes and annoying the attendee sitting next to me with my rapid 80 wpm typing. I can also now look over the slides from the sessions I could not attend.

The second advantage was the ability to blog during the sessions – because I was able to tune out the moderator as (s)he read the text from panelist bios, or the speakers themselves as they read from their slides. Alas, this meant that I still annoyed the attendees unfortunate enough to sit next to me…while they were surfing Facebook on their smart phones and iPads because they had zoned out, too.

I wonder if it ever occurs to speakers that no one will listen to them talk if they can just read the slides on the screen. Granted, many speakers did a great job by elaborating on the content of their slides by discussing programs or activities that related to the text; however, we were most likely not listening to that, either – because we were reading their slides. Most PowerPoint presentations are designed as stand-alone pieces and are written to be read rather than as presentation tools, which is what they are supposed to be. This leads to a high concentration of bulky jargon and large words, which in turn causes the speaker to stumble over some words and mumble others as they wade through their slides. If you have had training in public speaking, you understand that people read differently than they listen. Anyone listening to these presentations would be absolutely lost, as they would be unable to process the barrage of bureaucracy-speak that is clumsily read aloud by each speaker as quickly as possible to leave time for other panelists to read their slides just as quickly so that we can get to questions.

Luckily, we all know what is going on because we are reading their slides rather than listening to anything.

Flickr, HikingArtist.com

This is the circle of death – by PowerPoint. We all go to sessions and panel presentations, read slides, yawn, get bored, and then give the same types of presentations to pay it forward and bore the audience listening to us. It is a disservice to everyone: it numbs the minds of audiences everywhere and allows presenters to escape a true public speaking experience.

The only way to break the circle of death is to build your presentations differently. Use as few words on your slides as possible. Use pictures and data so that your audience is forced to listen to you explain them – you know it better than they do, so you should not have to read it off your slides. Additionally, if we are actually listening to you, we will get your jokes when you actually crack them, thus bypassing the awkward silence as we emerge from our stupor with the realization that you strayed from your “script.” Better still if you do not need any slides at all! It is a truly intimidating and earth-shattering prospect, but I promise that it is possible – orators did it for thousands of years before computers and teleprompters were invented.

Break the circle of death. Save us from having to read your slides while we ignore you reading from your slides. I may not be able to blog as much, but hey – I am much happier to be listening to you instead.