Law, Human Rights, and Health Databases: A Roundtable Discussion

By Joseph J. Amon

Published September 11, 2014

Three databases have launched in recent years that provide information on law, human rights, and health. LawAtlas, the Global Health and Human Rights database, and the Doctors Who Torture Accountability Project each seek to organize and put online legal information relevant for policy analysis, human rights research, and advocacy.

To explore the nature of each project, the motivation behind it, and what this explosion of resources might mean for the larger field of public health law and health and human rights scholars and activists, we held a virtual roundtable discussion with individuals working on each project. Scott Burris, head of the LawAtlas project team, is a professor of law at Temple Law School and director of the school’s Center for Health Law, Policy, and Practice. He also directs the Robert Wood Johnson Foundation’s Public Health Law Research program. Kate Barth is a legal officer at the Lawyers Collective in India, and along with Ana Ayala, a lawyer and associate at the O’Neill Institute for National and Global Health Law at Georgetown University, has worked on the Global Health and Human Rights database. Steven Miles, creator of the Doctors Who Torture Accountability Project, is a professor of medicine and bioethics at the University of Minnesota Medical School in Minneapolis.

All three projects advance an approach to public health law and human rights that can be considered a type of policy surveillance – monitoring and reporting laws and legal cases related to health policy, health rights, and the involvement of health workers in torture. Policy surveillance, like disease surveillance among epidemiologists, is a critical function for those working at the intersection of health and law. It can provide an analytical tool to assess prevalence (how many states have a law on syringe access or a constitutional guarantee of the right to health information?) and trends (are more health laws being adopted? Are more physicians being tried for human rights abuses?). It can also facilitate the evaluation of health laws, health rights, and accountability mechanisms (what happens when a health law is introduced or a health rights legal case is adjudicated?).

The databases also bring together scholars, practitioners, and advocates to understand precedents and compare the use of law, the state of human rights, and accountability for abuses in different jurisdictions. As Steven Miles says: “We are all inventing something quite new-a new form of community organizing and empowerment.” For this discussion, six questions were put to each person and the responses were shared among everyone:

Amon: Can each of you tell me a bit about your database?

Steven Miles, Doctors Who Torture: The core of Doctors Who Torture is a compilation of documents discussing the status of physician-supervised torture around the world. Countries are classified according to whether there is solid evidence of physician-assisted torture since 1975 when the World Medical Association (WMA) endorsed its Declaration of Tokyo against physician complicity with torture. Countries are further classified as to whether their courts or medical boards have punished their torture doctors. Supporting documents are given for each country and for each punishment. The website also contains a library of references for courts or medical associations to use in the process of holding hearings. The site is regularly updated.  There is an associated Facebook group.

Scott Burris, LawAtlas: LawAtlas is the world’s first and only software system designed specifically for scientifically coding and publishing legal data. It was created to demonstrate the value and feasibility of “policy surveillance,” and it has both a public website where visitors can learn about the law and trends over time (and download the underlying legal data), and the Workbench, a web-based software system that allows researchers to collect and code legal data and publish it online. To date, we have more than two dozen sets of data uploaded, including data on laws related to anti-bullying, Good Samaritan overdose prevention, HIV criminalization, medical marijuana, Naloxone overdose prevention, nurse practitioner prescribing, and syringe possession.

Ana Ayala and Kate Barth, Global Health and Human Rights Database: The Global Health and Human Rights Database is a free online database of case law, national constitutions, and international instruments from around the world relating to health and human rights. It was developed by the Lawyers Collective and the O’Neill Institute for National and Global Health Law at Georgetown University, in collaboration with a worldwide network of over 100 partners—including NGOs, academics, and private researchers of civil society partners. It is interactive, searchable, and fully indexed. As of mid-2014, the database features information from more than 80 countries and in 25 languages. It also provides over 500 plain-language summaries and 200 original translations of case law previously unavailable in English. The database covers the full breadth of health-related rights issues (everything from sexual and reproductive health to health systems and financing to occupational or environmental health).

Amon: Why did you create it?

Miles, Doctors Who Torture: Physicians are integral to the modern infliction of torture. They devise and implement means of torture that minimize scars that serve as evidence. They help keep prisoners alive who are not supposed to die by calibrating the severity of torture to their medical conditions and treating injuries caused by torture before their patients are returned to torture centers. They falsify medical records and death certificates to conceal torture. Since 1975, the human rights movement has been increasingly successful in getting doctors punished for torture. Two-thirds of hearings are before medical boards, one quarter are by courts. These hearings are occurring at an accelerated pace and in more countries.

The site was created for multiple purposes. First, many medical communities do not believe that doctors are ever held accountable. They speak of physician impunity for torture as if it is inevitable, rather than something that is conferred by governments, medical licensing boards, medical associations, and the general public. This site is to show that doctors can be held accountable and to facilitate that process by providing case examples and standards. In the long run, the goal of holding physicians accountable is to move physicians from being accomplices to torture to acting as human rights monitors for prisoners. Another goal is to publicly identify and shame countries, medical boards, and medical associations that elect to tolerate torture medicine. Countries like India, Israel, Portugal, Spain, and the United States should not allow physicians to torture with impunity.

Burris, Law Atlas: The Public Health Law Research Program was established at Temple Law by the Robert Wood Johnson Foundation in 2009. Its mission is to fund and support scientific research documenting the impact of law on public health. Supporting strong scientific research meant, in part, defining and spreading reliable research methods suited to legal questions. When law is being evaluated, the very first methods question is how to capture the attributes of law—the dependent variable—in a way that the scientific community will accept as reliable and scientifically sound. That means using transparent and consistent methods to transform the text of laws into numbers.

We defined these methods of collecting and coding legal data, but when we set out to demonstrate them we could not find any software that was really right for the task. We wanted something that would store the text of the laws we were coding, and let us create coding forms to make the coding faster and more accurate. So we built it ourselves. Our aim was to promote wider availability of scientific legal datasets for use by researchers, but one day we realized that we had a trove of digitized legal information that we could easily share with the public. So we created an interactive public portal where we could publish our data.

The rationale for policy surveillance is clear, once the importance of law to health and the imperative to evaluate its impact are accepted. If law matters to health, people who are responsible for protecting it need basic information about what it requires and where it applies. If the impact of law is to be empirically assessed, the law under surveillance must be measured in a way that creates data for evaluation. This entails scientific methods of (usually) quantitative coding, but also the collection of longitudinal legal data, since the most robust evaluation designs require variation in time as well as space. The use of scientific coding procedures, combined with modern information technology, allows the efficient publication of digitized data to the Internet. Publication supports the rapid diffusion of policy information to health professionals, policy makers, and the public.

The impulse to know what the health law is in a federal system with substantial health authority exercised at the state and local levels is an old one. A recent search we conducted for contemporary US 50-state surveys of health law turned up hundreds of instances in which legal or other researchers had collected and in some way coded or tabulated state health laws. The same is surely true at the international level. Only in a very few instances, however, is this sort of legal information available in repositories that maintain the material up to date, provide access to data, and collect and code the law in a way suitable for evaluation. The adoption of policy surveillance as a standard practice of public health, which the Institute of Medicine has encouraged, will bring a traditional legal practice in line with the way public health monitors other phenomena of interest.

Ayala and Barth, Global Health and Human Rights DatabaseThe right to health and other health-related rights have been enshrined in a number of international treaties, regional instruments, and national constitutions and laws. This has given rise to a significant body of cases decided by national courts and international and regional human rights bodies that interpret the content and State obligations of the right to health and other health-related rights, based on relevant human rights treaties and other legal instruments. However, despite growing use of international, regional, and domestic litigation to enforce and interpret rights in health-related matters, it was very difficult for practitioners to find these impactful cases in other jurisdictions as there was no comprehensive collection or categorization of health and human rights judgments. The database is a response to this important need.

Amon: Who is using your database?

Miles, Doctors Who Torture: The site is being used by 3,000 visitors a month from all continents.

Burris, LawAtlas: We are working with a variety of local, state, and federal health agencies, who are consulting the database for information or, in some cases, using it to conduct their own policy surveillance projects. For example, the Seattle andKing County (Washington State) Health Department uses LawAtlas to collect and track obesity and smoking policies in schools, parks, and other institutions in the county. News media and advocates use LawAtlas to stay up to date on the spread of legal innovations like youth sports concussion laws and laws dealing with drug overdose. And, as we originally intended, researchers are using LawAtlas data in evaluations.

Ayala and Barth, Global Health and Human Rights Database: The database provides a starting point for research and practice. The cases in the database, more than 1,000 so far, allow for comparative legal analysis and empirical research on the impact of health-related rights on health outcomes, while the plain-English case summaries are understandable to non-lawyers. So, we expect that the database is being used by scholars, legal practitioners, and human rights activists. We know that it is already being put to good use in India—during one case argued by the founder of Lawyers Collective, opposing counsel countered his arguments by relying on a case and translation he had pulled from the database. With the database being relatively new, we are working to more accurately capture this information, as it will help the database become better tailored to the needs of our users.

Amon: What do you think of the other databases?

Miles, Doctors Who Torture: I am stunned by the quality and amount of information on the other two databases. Do you people ever sleep?! These sites are labors of love with some OCD mixed in. The business model is impossible to imagine. We are all inventing something quite new—a new form of community organizing and empowerment. The current databases are extraordinary, but they suffer from the same frontier problems: How do we index the sites collectively so that they can be found and used by people working in coffee shops in developing and totalitarian countries? How can we create safe ways for users to access the sites given government surveillance? How can new users have a rough sense of how timely it is and ways to confirm the data? In my case, I publish links to all the raw data.

Burris, LawAtlas: I agree with Steven on his main points. We all believe or hope that this information can make individuals and institutions change in ways that promote human well-being. We are all taking advantage of the fact that it has never been easier to compile and share information with anyone with access to a computer or smart phone. The main technical difference between LawAtlas and the other two sites is that we have built our content as data; that is, legal text has been converted via human coding into numbers. This is crucial for quantitative analysis, but it also has implications, as yet not fully explored, for the use and dissemination of legal information. More importantly, the transformation of legal information into data makes it possible for the greater integration of law into all the other websites and databases that have flowered in this digital age. It sounds like Steven does this mostly on his own, which illustrates how much the costs of getting and sharing information have dropped. Maintenance of the Global Health and Human Rights database, I believe, and LawAtlas depend upon staff: collecting, organizing, coding, and publishing legal information may be cheaper than ever before, but it is by no means free.

Ayala and Barth, Global Health and Human Rights Database: These databases are labors of love, borne out by countless hours of research and partnership building, and are crucial for lawyers, academics, doctors, human rights practitioners, and especially those working in resource-poor settings and parts of the world that wouldn’t otherwise have access to this information. The Doctors Who Torture Accountability Project represents an important issue that must be addressed for the sake of protecting lives, and more than anything, it is a practical tool for achieving exactly what it sets out to do: hold doctors who torture accountable. Likewise, LawAtlas is important because it allows users to have greater access to laws categorized by topic. Raising public awareness of these laws and providing greater access to them can facilitate their implementation as more people will be able to read and understand the content of the laws.

Amon: What does the creation of these databases say about the field of health law and human rights more generally?

Miles, Doctors Who Torture: The Internet and social media play an increasingly important role in the human rights movement, as information about human rights abuses and tactics for addressing those abuses are now so easily disseminated. There are countless human rights databases and websites. Academics and professional resources can be critical to compiling reliable information for human rights and justice campaigns, and social media provides a way of narrow-casting, a way for highly specialized movements to rapidly and effectively share information. A country cannot stop this information without paying the devastating price of going offline. ISP masking offers a reasonably safe way for people to communicate with databases.

Burris, LawAtlas: In health generally, and certainly in health and human rights, the law (a term I use broadly to include human rights) has been given great lip service, and in fact it has paid a demonstrably powerful and essential role in preventing illness and promoting health. Yet in certain important ways, it has never been taken seriously. We spend billions on bench science for medicines, and for behavioral research trying to understand how to create environments and foster behaviors that make us healthier. We invest in training and in systems of data collecting and monitoring to support all this research and intervention. But law, except in a few exceptional areas like tobacco control, just does not get the serious attention and support its importance would justify. Leaders—and not just leaders in health—talk about how important human rights are generally, and to health, yet it took civil society, led by the O’Neill Institute and Lawyers Collective, just to compile the basic law. Two years ago, I was on the Technical Advisory Committee of the Global Commission on HIV and the Law. Despite decades of talk about the importance of an enabling environment, it was still not possible, without doing the research from scratch, to identify which countries had actually adopted enabling laws. Without knowing what the law on the book is, we can’t research its implementation, and without implementation research, we can’t hold governments accountable or properly assess impact. In short, the future success of public health law and health and human rights depends in an important way upon data that can be used to promote accountability and efficacy.

Ayala and Barth, Global Health and Human Rights Database: The creation of these databases speaks to the democratization of the field of health and human rights. They also highlight the importance of tying local laws and policies to larger national or global trends, and vice versa. The right to health is enshrined in international instruments, but it’s critical to look at how such international obligations translate into actual improvements on the ground. The creation of these databases is a step towards demystifying such local impact, better monitoring progress (or setbacks), reinforcing positive norms, and, hopefully, improving domestic and international accountability by putting concrete tools into the hands of human rights practitioners everywhere. Moreover, these databases demonstrate that the simple collection and categorization of data can go very far in addressing issues of health and human rights and advancing the field. They also highlight the important role that law plays in improving the health and lives of individuals and populations.

Amon: What are the next steps for your projects?

Miles, Doctors Who Torture: I am finishing a new book, tentatively titled Torture, Doctors, and the New Human Rights Movement, that I expect to see published in early 2015. There will be a major upload of information to the database in July and August (2014).

Burris, LawAtlas: Our hope is that LawAtlas can become a self-sustaining surveillance portal that becomes known as a primary source of public access to health policy information and data. We will continue working to add features that better allow users to identify trends in the law, to track adoption of federal and expert health law recommendations, to understand where particular states stand in adopting effective laws and repealing ineffective ones, and to link users to the evidence base. LawAtlas is already configured to do surveillance at the global level, and we are actively seeking opportunities to put it to work.

Ayala and Barth, Global Health and Human Rights Database: It is our hope that the Global Health and Human Rights Database will not only continue to grow in content and contributors, but will become available in other languages. We intend to enter a more analytical phase, where we can offer the user even more sophisticated ways of analyzing the data so as to highlight trends in health and human rights with respect to litigation and the development of international and regional human rights instruments, as well as constitutions. We also hope that the database will become the forum where health and human rights advocates will come to share information and exchange ideas.

 Joseph J. Amon, PhD, MSPH, is the director of the health and human rights division at Human Rights Watch, New York, NY, USA.

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