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What are some examples of effective human rights programming in the area of patient care?
Introduction
In this section, you are presented with four examples of effective activities in the area of patient care and human rights. These are:
- Litigation to protect the confidentiality of medical information in the Ukraine
- Litigation to ensure patient treatment with dignity in the United Kingdom
- Monitoring of patient rights in Europe
- Engaging health workers in health rights education and action in Uganda
Rights-based programming
As you review each activity, ask yourself whether it incorporates the five elements of “rights-based” programming:
- Participation
Does the activity include participation by affected communities, civil society, marginalized groups, and others? Is it situated in close proximity to its intended beneficiaries?
- Accountability
Does the activity identify both the entitlements of claim-holders and the obligations of duty-holders? Does it create mechanisms of accountability for violations of rights?
- Non-discrimination
Does the activity identify who is most vulnerable, and how? Does it pay particular attention to the needs of vulnerable groups such as women, minorities, indigenous peoples, and prisoners?
- Empowerment
Does the activity give its beneficiaries the power, capability, capacity, and access to bring about a change in their own lives? Does it place them at the center of the process rather than treating them as objects of charity?
- Linkage to rights
Does the activity define its objectives in terms of legally enforceable rights, with links to international, regional, and national laws? Does it address the full range of civil, political, economic, social, and cultural rights?
Finally, ask yourself whether the activity might be replicated in your country:
- Does such a project already exist in your country?
- If not, should it be created? If so, does it need to be expanded?
- What steps need to be taken to replicate this project?
- What barriers need to be overcome to ensure its successful replication?
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Example 1: Litigation to protect the confidentiality of medical information in the Ukraine
In 2006, on a patient’s behalf, Vinnystya Human Rights Group challenged a Ukrainian regulation requiring the inclusion of a person’s medical diagnosis in forms submitted to employers to permit absence from work due to sickness and the collection of benefits.
Project type
Litigation
Health and human rights issue
A government decree in the Ukraine stipulated that a medical certificate, which included a person’s diagnosis and ICD (International Classification of Diseases and Causes of Death) disease code, had to be submitted to employers to excuse absence from work due to sickness and allow for the collection of benefits.
Actions taken
- Vinnystya Human Rights Group filed a challenge to this regulation on behalf of Svitlana Yuriyivna Poberezhets at the Pecherskyi District Court in Kyiv.
- Ms. Poberezhets claimed that this regulation violated her rights to privacy and confidentiality under the Ukrainian Constitution and Basic Law on Health Care. She was forced to submit a medical certificate with information about her acute respiratory infection to her place of work, which was then disclosed to her co-workers.
- Vinnystya Human Rights Group and Ms. Poberezhets were opposed by the Ministry of Health, Ministry of Labour and Social Policy, the Social Insurance Fund for Temporary Disability, the Social Insurance Fund for Industrial Accidents and Occupational Diseases, and the Ministry of Justice.
Results
- On July 2006, the court agreed with Vinnystya Human Rights Group and Ms. Poberezhets that requiring the submission of diagnosis information to a person’s place of work infringed on basic constitutional rights. The court specifically held that it violated (1) privacy protections under the Ukrainian Constitution and [European] Convention for the Protection of Human Rights and Fundamental Freedoms and (2) confidentiality protections under the Ukraine Basic Law on Health Care, Civil Code, and “On Information” Law.
- The court pointed out that regulatory bodies must act within the scope of their authority under the Constitution and legislation.
- It thus ordered the regulation’s registration as unlawful and contradictory and its cancellation.
- The government later amended the decree, excluding confidential information from medical certificates.
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Example 2: Litigation to ensure patient treatment with dignity in the United Kingdom
A psychiatric patient in the UK sued a hospital which overmedicated her and treated her lice infection by shaving off her hair.
Project type
Litigation
Health and human rights issue
A psychiatric patient based at an NHS (National Health Service) hospital was making good progress. She was moved without notice to a private hospital with an NHS contract. She developed an infection of head lice. Initially, she was treated with anti-lice shampoo, but this was quickly discontinued. After a 20-minute talk with a doctor and nurse, she was persuaded to sign a consent form to have her hair completely shaved off. The patient was a woman in her 20’s who was very careful about her appearance and had sported shoulder length blond hair for many years. At this time, she was receiving 7000 mg of anti-psychotics daily, compared with a maximum dose of 1000 mg recommended by the Royal College of Psychiatrists.
Actions taken
- The patient sued the hospital for assault and breach of human rights and lodged a claim against the doctor for overmedication.
Results
- The hospital made various offers for compensation and issued an apology. The patient and her family accepted an offer of just over £10,000. The court approved the compensation award.
- The doctor denied wrongdoing, but the court awarded £1000 in damages for the period of overmedication.
- Positive media coverage during this case drew public attention to the importance of patient rights protection and ensuring the humane treatment of psychiatric patients.
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Example 3: Monitoring of patient rights in Europe
In 2003, the Active Citizenship Network partnered with local NGOS to monitor the compliance of 13 European Union countries with the European Charter of Patients’ Rights.
Project type
Human rights monitoring and documentation
Health and human rights issue
Governments across Europe have been slow to establish health care systems in line with WHO standards. With growing medical expenses, governments have been rationing health services. Patients, in turn, are pressing for greater access to medical information in order to play a more active role in managing their treatment and shaping the delivery of health services. With increasing freedom of movement across European Union states, there is also a need for greater harmonization of health systems and the assurance of basic standards.
Actions taken
- In 2003, the Active Citizens Network (ACN), a European network of civic, consumer, and patient organizations, undertook a two-year study of 13 European Union countries to see how they measure up to the European Charter of Patients’ Rights.
- Working with public health experts, ACN translated the Charter into 160 measurable indicators that could be assessed across various countries.
- ACN partnered with local NGOs to carry out the monitoring project. Partner organizations interviewed 70 key stakeholders—including medical professionals, journalists, insurance carriers, and government ministry representatives—and visited 39 main hospitals in each of the European capital cities. NGOs further answered a questionnaire on their country’s patient rights legislation. This methodology was piloted in Italy and then rolled out to the rest of the countries.
Results
- The results of the study were available in 2005 and publicly disseminated.
- The study concluded that Europeans do not have sufficient access to high-quality health care, medical innovation, or information about health care choices and documented the degree to which access to care is lacking.
- The monitoring project helped initiate a dialogue between civil society and governments on health care delivery. The hope is that this will lead to greater governmental accountability.
- Citizens can also use the results of the study as a basis for advocacy for better care and for health policy changes.
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Example 4: Engaging health workers in health rights education and action in Uganda
In 2003, Ugandan health workers united to urge their colleagues and government to recognize and protect the right to health through anti stigma, health rights leadership, and health budget campaigns.
Project Type
Movement-building and advocacy
Health and human rights issue
Uganda faces major health and human rights challenges including AIDS-related stigma and discrimination, a lack of human rights awareness amongst health workers, and severe under-funding of the health sector.
Action taken
To address these and other health rights, seven health worker leaders founded the Action Group for Health, Human Rights and HIV/AIDS (AGHA) in 2003. AGHA brings together over 600 Ugandan doctors, nurses, other health professionals, NGOs and other institutions interested in promoting the right to health. AGHA spearheads three major campaigns to improve Uganda’s AIDS and health response:
- Anti-Stigma Campaign: a Stigma Task Force of over 50 health workers to combat stigma in health settings through education of health workers and community members.
- The Health Rights Leadership Campaign: outreach and training to health workers, the general public, and the media on health and human rights in order to integrate human rights into the medical paradigm.
- Health Funding Campaign: Government advocacy on budget gaps for health services through the media, public forums, and research.
- Health Workforce Campaign: Advocacy for improved and increased health workforce.
Results
- The medical paradigm is changing to embrace human rights:
- The AGHA Stigma Task Force has trained over 250 health workers in four districts on preventing discrimination and promoting patient rights, and AGHA’s curriculum is now included in the official continuing medical education program in these districts.
- The Uganda Medical Association has started a human rights committee, which AGHA will chair.
- AGHA’s health student leadership program has over 300 members and chapters at all public medical schools in Uganda.
- Health rights are becoming entrenched in key Ugandan institutions:
- The Ministry of Health and the Uganda Human Rights Commission have both created right to health desks.
- AGHA has helped WHO train Parliamentarians in health, human rights, and policy.
- The health budget in Uganda is increasing: In April 2007, the parliament announced an 8 billion Uganda shilling increase in the health budget.
