Law and Health Initiative (LAHI) of Open Society Foundations (OSF)'s Public Health Program
"Meaningful engagement with health practitioners has entailed connections to day-to-day practice, participatory methodology, inclusion of marginalized voices, and linkages to provider rights and challenges."
The Open Society Foundations (OSF) have attempted to respond to the need to build health and human rights capacity by supporting the development of over 25 courses on human rights in patient care in 9 countries of Eastern Europe and Central Asia (EECA). This paper describes the communication strategies and activities carried out as part of this initiative, which is designed to advance the human rights of society's most marginalised - people with disabilities, people living with HIV, people who use drugs, and ethnic and sexual minorities - for whom "health systems can too often be places of punishment, coercion, and violations of basic rights to privacy and confidentiality, rather than places of treatment and care."
The first section outlines the context in EECA countries. The participating countries in the initiative were republics of the former Soviet Union (Armenia, Georgia, Kazakhstan, Kyrgyzstan, Moldova, Russia, and Ukraine) or part of the former Socialist Federal Republic of Yugoslavia (FYR Macedonia and Serbia). All emerged from communist systems (either Soviet or Yugoslav) and have experienced disintegration followed by transition and continuing change. For example (footnote numbers have been removed), "[f]ear caused by criminal laws banning syringe provision and requiring government registration of all even suspected of drug use drives those who use drugs away from life-saving HIV prevention and treatment, as well as other health services. It further fosters risky behavior such as needle-sharing, which facilitates transmission of HIV, hepatitis B and C, and tuberculosis."
The second section presents the various components of the OSF initiative, which attempts to assist EECA faculties of medicine, law, and public health to incorporate human rights in patient care into the professional training of medical and legal personnel. The goal is to foster an understanding of the interconnectivity and human value of all the stakeholders - patients, doctors, health managers, and others, as well as the role of the state. The Law and Health Initiative (LAHI) of OSF's Open Society Public Health Program, in collaboration with other OSF partners, launched the initiative in 2007, when LAHI hosted a seminar that brought together medical, public health, and law faculty from 6 EECA countries along with key partner non-governmental organisations (NGOs) and patient advocates. Participants spent an intensive week examining critical human rights in patient care topics and thinking creatively about how to structure a course addressing these issues. LAHI and OSF partners provided one year of support for the development and piloting of the courses, contingent on institutional backing from the host university and the understanding that if piloting was successful, the courses would then be a regular part of the offerings at each university. Parallel to this initiative, in Romania, OSF's Roma Health Project partnered with the Association for Development and Social Inclusion (ADIS), a Romanian NGO, to develop courses on non-discrimination and ethics in 4 medical schools in Romania.
Table 1, shown at the end of this paper, provides a summary of the courses directly developed as part of this initiative - which are also described in detail within the text of the paper. Overall, all of the courses created course materials and manuals, with some also compiling textbooks. Most of the courses are housed in faculties of law, medicine, or public health (including health management). Two are taught in medical colleges for nurses. They are taught at varying educational levels: master-level law; basic/undergraduate, residency, and postgraduate medical; basic-level nursing; and master-level public health and health management. Number and type vary by country. In one case, "[p]rinciples such as confidentiality, privacy, and informed consent were of interest to doctors, medical students, and health managers when approached through a human rights lens. At the outset, some students expressed uncertainty about paying special attention to marginalized groups, rather than keeping a broad focus on the human rights of patients generally. However, during the course, they unpacked the principle of non-discrimination and learned to appreciate the particular health challenges facing marginalized populations."
As the authors explain, course evaluations consistently stressed the need for practical experience and exercises. Students said that although they must understand theory, "real life" examples and case studies, including actual legal cases and video where these exist, are most effective. They also appreciated the interdisciplinary team approach to teaching these courses and interaction with multiple perspectives. Students had the opportunity to hear from doctors, bioethicists, ombudspersons, Ministry of Health staff, and directly from members of marginalised groups, as well as from lawyers and law professors. Students particularly praised the use of interactive teaching methodology. Some of the most popular exercises required doctors and medical students to assume the role of patients, patients' family members, or representatives in a role play, or that of lawyer or judge in a moot court exercise.
Consequently, participating professors (even those with practical experience and degrees in both law and medicine) continued to request training and materials on interactive teaching. To meet this need, LAHI and OSF partners organised a series of workshops from 2009 through 2012 for faculty to share materials and experiences with each other, interact with international experts, and jointly develop lesson plans and case studies. Workshop topics were taught through a variety of different methods, including role plays, games, debates, brainstorming, needs assessments, film, and guest speakers, enabling faculty to experience and experiment with different interactive teaching methodologies. Peer learning during the workshops is described here as being critical. LAHI further supplemented materials produced by faculty themselves through the workshops. For instance, LAHI partnered with the Health Equity and Law Clinic at the Faculty of Law, University of Toronto (Canada) and with the Hastings Center to develop a series of case studies on cutting-edge health and human rights topics. Issues explored included access to sex reassignment surgery in relationship to legal identity change, access to maternal care for women who use drugs, and coercive sterilisation of women living with HIV. LAHI and OSF partners also supported the development of an online community of practice to enable faculty to stay in contact more regularly and to facilitated greater sharing of resources. In collaboration with NGO partners, OSF is currently producing a series of videos focused on work protecting the rights of patients from socially marginalised groups, which will be added to the website.
The final section shares reflections and lessons from this work, indicating areas for further development. Selected excerpts from this section, with a focus on communication lessons, include:
- "OSF staff and consultants did not attempt to collaborate with the university administration themselves. Rather, they took a more bottom-up approach, working directly with faculty and investing in building their substantive capacity....The bottom-up approach taken by this initiative has also led to variation amongst the different courses."
- "Human rights cannot be adequately taught through classroom lectures....Students need to grapple with difficult questions, and the voices of people from marginalized communities need to be brought into the classroom....[T]his initiative became as much about how to teach as it was about what to teach." Ten key principles of human rights education for health care providers:
- Training should be part of a broader initiative.
- Training should be action-oriented and connected to advocacy.
- Always plan for follow up.
- Connect training to the daily practice of health providers.
- Involve opinion leaders and identify leaders at different levels in the health system.
- Bring the voices of the patients and the marginalized into the training.
- Use interactive, participatory adult methodology.
- Recognise provider rights and allow space for health providers to talk about their challenges.
- Use peer-led trainings.
- After the training, create benchmarks, checklists, or visual reminders to help integrate human rights into health practice.
- "A major gap that this initiative has not yet been able to address adequately is the dearth of scholarly research and writing on health and human rights from EECA countries."
"Following discussions with LAHI, the Association of Schools of Public Health in the European Region (ASPHER) has agreed to institutionalize this initiative under its auspices. ASPHER’s leadership will enable greater sustainability, more local control, and wider dissemination of the human rights in patient care concept."
Health and Human Rights, Volume 15, Number 2 (December 2013). Image credit: Eurorights