Navigating the Access to Information Challenge in Health Rights Litigation in Uganda

Namusobya Salima

Published September 23, 2014

Strategic litigation in response to human rights violations is an increasing practice around the world.[1] Health rights litigation is undertaken to give effect to the right to the highest attainable standard of health and associated rights, such as the right to equality and non-discrimination, patients’ rights, and the right to a remedy.[2] While information is crucial to the success of any health litigation case because it provides evidential proof, access to information remains one of the key obstacles that lawyers face in litigating health rights cases, often resulting in failure to file or sustain cases before the courts of law.

This essay highlights the challenge of accessing information in health rights litigation in Uganda and some strategies employed to overcome it. The data for this paper includes a desk review of laws, policies, research reports, articles, and judgments on health rights and access to information. Additional information was obtained through informal inquiries from lawyers who have handled human rights and access to information cases, and the author’s own experience as a human rights advocate in Uganda. Some of the information and recommendations were drawn from a regional experts’ meeting on access to patient information, organized by the Center for Health, Human Rights and Development (CEHURD) in partnership with the FXB Center for Health and Human Rights at the Harvard School of Public Health in December 2013, and participant discussions during the Global School on Socioeconomic Rights: Health Rights Litigation at the FXB Center for Health and Human Rights at Harvard in September 2013.

Litigation as a strategy for promoting the right to health is still a nascent phenomenon in Uganda, but its growth is threatened by myriad challenges including the fact that the Constitutional Court in the case of CEHURD & Others v. Attorney General upheld the political question doctrine that threatens the justiciability of economic, social and cultural rights.[3] One of the key obstacles faced by actual and potential litigants is the failure to access existing information or an absence of credible, documented information to substantiate claims of health rights violations. Information is needed to sustain cases of medical malpractice, enforcement of individual health rights, or systemic violations of the right to health. In cases of medical malpractice, the information required usually includes patient information such as medical records and test results.[4] In cases of systemic violations of the right to health, there is a need to establish state responsibility, and this can require such information as government budgets, policies, practice directions, or implementation strategies. Additionally, litigants may require institutional information—for example, conditions in prisons, or verifiable statistical data to show patterns over a period of time.

The right to information is established under international human rights law, and the Constitution of Uganda provides for the right of access to information.[5] Uganda passed the Access to Information Act in 2005, and released an implementation plan and Regulations to the Act in 2011. The Patients’ Charter came into effect in Uganda in 2009.[6] Article 16 of the Charter establishes a patient’s right to obtain their medical information, and includes provisions on privacy and confidentiality that require informed consent prior to release of one’s medical information.[7] Furthermore, the Charter allows for a clinician to withhold medical information if they feel strongly that it is likely to cause severe harm to the patient’s mental or physical health.[8]

However, there is a disconnect between the provisions of the law and practice. Lawyers handling health rights cases in Uganda struggle to gain access to public information due to lack of cooperation from government officials. Accordingly, some have been forced to be innovative and, at times, employ underhanded tactics in order to secure necessary information when formal requests have been turned down or ignored.[9] For example, a lawyer at CEHURD confided that ahead of the case of CEHURD & Others v. Attorney General (Petition 16), they were forced to be innovative by asking the area Member of Parliament to intervene before hospital officials could release information regarding the cause of a maternal death at a health center.[10] Lawyers have also approached sympathetic individuals within institutions to assist them in accessing official records. This was, for example, the case when the Initiative for Social and Economic Rights was gathering information to support a case regarding violation of the right to a clean and healthy environment against the National Environment Management Authority (NEMA) and the Attorney General. In both instances the strategies followed official requests for information that were ignored.

In the recent case of CEHURD & Others v. Executive Director of Mulago National Referral Hospital and Attorney General, health rights advocates resorted to litigation as a means for accessing documents held by the National Referral Hospital. The main case involves a woman who delivered twins at the hospital, but was given only one live child at the time of discharge. The hospital claimed that the second baby had died shortly after birth, but they could not produce the dead body. The mother was discharged without any medical records or a death certificate for the child. Following pressure from the couple and their supporters, the hospital produced a dead body whose DNA was later found not to be a match with either of the supposed parents.

Prior to filing this suit, the lawyers made several attempts to access information to support the case, with limited success. However, during a regional meeting organized for practitioners to discuss access to patient information, it was suggested that the lawyers secure a court order to compel the hospital to release the required information. The lawyers did so and in January 2014 a High Court judge ordered the hospital to release all the requested documents, including the patient’s file, mortuary record, list of health workers on duty, registry of infants delivered, antenatal and delivery records, and a copy of the DNA results. CEHURD subsequently submitted a formal request to the hospital for these documents, to no avail. When the case was heard on March 26, 2014, the judge adjourned for a few hours and ordered the hospital to produce all the documents as per the order. The hospital complied, and the court then proceeded with the hearing.

It is, however, too early to conclude that litigation will be a reliable strategy for ensuring access to information because some earlier attempts to enforce the Access to Information Act were not successful. In the case of Charles Mwanguhya Mpagi & Izama Angelo v. Attorney General, the Chief Magistrate observed that the applicants had a right to access the oil production sharing agreements between the government and several multi-national oil companies, but that, on balance, the harm to the confidentiality interests from disclosure outweighed any public benefits from disclosure, given that the applicants failed to establish or even allege any concrete public benefits.[11] The justice system in Uganda is known to be slow; therefore, having to litigate in order to secure information further prolongs the hearing of any case.

Notably, although patients have a right to access their own medical information, very few people in Uganda have sought this information from either public or private hospitals and clinics. This is probably because patients are not aware of their rights, or do not know the importance of having that information.[12]  Health practitioners—especially those working in private facilities—who are reluctant to release medical records for fear of losing clients to alternative clinics once they have their diagnosis, compound the situation.[13] As such, obtaining medical records for litigation purposes becomes extremely difficult, especially when the institution knows the reason the records are being sought. The situation becomes more complex when a third party requests the information for a deceased or incapacitated patient. Such requests are often countered by claims of privacy and doctor-patient confidentiality, resulting in lack of evidence to sustain litigation. A case involving a mother’s death during childbirth in a private hospital in July 2013 has not yet come to court because the hospital has not released the information necessary for any ruling to be made.[14]

A dearth of credible research and reliable, systematic statistical information also hampers the collection of information to support health rights litigation. This makes litigation about policy issues and comparative analysis over time difficult. Tracking budget information is also difficult because of the discrepancies between the forecast and actual expenditures.

Access to information is an area requiring more study, attention, and advocacy to assist health rights litigation. In Uganda, health rights advocates must develop a comprehensive strategy for navigating access to information challenges using legal and non-legal methods. Advocacy work is necessary to ensure effective implementation of the Access to Information Act by enabling both physical and substantive access to health-related information in a timely manner, as required by the Committee on Economic, Social and Cultural Rights, while not impairing the right to have personal health data treated confidentially.[15]  Government and civil society should engage in awareness-raising campaigns so that people understand their rights regarding health and health information, including their medical records. Doctors should also be educated about patients’ rights to their medical information. Public and non-governmental research institutions should be strengthened so they can produce quality research and statistical information.

Although litigation is ideally a strategy of last resort, it is essential that information is easily accessible when it is needed, to avoid further prolonging the court process. In Uganda, there is a need to develop a comprehensive legal and policy framework to give legally binding effect to the Patients’ Charter and guide the already existing right of access to medical records, while carefully balancing concerns about privacy and doctor-patient confidentiality.

Namusobya Salima is Executive Director, Initiative for Social and Economic Rights (ISER), Uganda

References

[1] M. Langford, “Domestic adjudication and economic, social and cultural rights: A socio-legal review,” Sur: International Journal of Human Rights 6/11 (2009), pp. 91–122.

[2] See articles 12, and 2(2) of the International Covenant on Economic, Social and Cultural Rights (ICESCR) and Article  2(3) of the International Covenant on Civil and Political Rights (ICCPR).

[3] CEHURD & Others v. Attorney General (2011), Constitutional Petition No. 16 of 2011.

[4] The International Dual Loyalty Working Group convened by Physicians for Human Rights in 1993, in J. Cohen and Ezer: Human Rights in Patient Care: A Theoretical and Practical Framework Health and Human Rights: An International Journal  15/2 (2013) state that limiting or denying information related to treatment of an individual is one of the common violations of human rights in patient care.

[5] See article 41 of the 1995 Constitution of the Republic of Uganda.

[6] Government of Uganda Ministry of Health, Uganda Patients’ Charter, (Kampala, 2009) Article 10.

[7] Ibid., article 15.

[8] Patients’ Charter (see note 6) article 10.

[9] Section 11 (1) of the Access to Information Act provides that a request for access to a record or information shall be in writing in the prescribed form.

[10] CEHURD & Others v. Attorney General (See note 3).

[11] Charles Mwanguhya Mpagi & Izama Angelo v. Attorney General (2009), Miscellaneous Cause 751 of 2009.

[12] H.R Kagoya, D. Kibuule, K.H Mitonga, E. Ekirapa-Kiracho, and J.C. Ssempebwa, “Awareness of, responsiveness to and practice of patients’ rights
at Uganda’s national referral hospital.” African Journal of Primary Health Care and Family Medicine. 5/1 (2013), pp.1-7 http://www.phcfm.org/index.php/phcfm/article/view/491

[13] Per information shared by practitioners during regional meeting on access to patient information during regional meeting of experts on access to patient information held in December, 2013.

[14] Ibid.

[15] General Committee No. 14, paragraph 12(b).