Ethical Considerations for a Data to Care Program
Data collection and use for public health action is a fundamental component of public health practice. Public health officials have a duty to act on evidence they collect for the public good and to ensure health departments carry out public health programs in an ethical and confidential manner.
The timing is right to consider more actively using HIV surveillance data to improve linkage to and re-engagement in care. In the early years, no treatment was available and fear and stigma surrounded HIV. Today, strong scientific evidence shows that antiretroviral treatment both saves lives (1–3) and prevents transmission (4). However, the HIV Care Continuum and other data show deficiencies in linkage and retention in care and unequal access to life-saving treatment, which provides a compelling scientific and ethical basis for public health action and use of surveillance data as part of the Data to Care strategy (5–12).
HIV surveillance systems have evolved as well, and now robust systems exist to collect essential laboratory data (both CD4 and viral load in most jurisdictions) to use in indicating if a person has been linked to care, retained in care, and ultimately achieved viral suppression. There are potential benefits to both individuals and the population for using these data more actively. Because HIV surveillance data are population-based, using them can facilitate access and linkage to care for potentially all diagnosed persons across a jurisdiction, equalizing opportunities to access services, and importantly, facilitating linkage for those persons who may no longer be receiving care and out of reach of traditional healthcare providers. Furthermore, public health authorities have the ethical obligation to use the data once collected to improve and protect the public’s health. While privacy concerns and stigma still exist, the strong scientific evidence and the existence of the infrastructure to carry out these activities shift the risk balance toward using surveillance data to maximize opportunities for care and treatment for HIV-diagnosed individuals.
With a strong justification for the use of surveillance data to support linkage to care and provision of healthcare services, the implementation of Data to Care programs also must be guided by ethical principles and based on sound public health practices. Review of ethical considerations before implementing any new public health approach is good public health practice; moreover, because of the unique historical and social context in which health departments have implemented HIV surveillance programs, review of these considerations within the local context of a jurisdiction will be essential for ensuring success.
Why should programs consider the unique history of HIV surveillance in their jurisdiction?
Public health agencies traditionally have worked with practicing clinicians reporting diagnoses to surveillance to implement infectious disease prevention and control interventions. These include notifying infectious people of their diagnosis, treating them or taking other measures to interrupt transmission, as well as notifying exposed persons of their exposure, identifying and treating contacts, and assisting uninfected contacts who have ongoing exposure to avoid infection. For some conditions, such as sexually transmitted diseases and tuberculosis, health departments use surveillance data to facilitate provision of partner services and case management as part of routine infectious disease control strategies. However, the use of HIV surveillance data for case management and referral to care, particularly to patients of private healthcare providers outside of the public health system, has been more controversial and has not been as widely implemented.
Concerns about individual privacy and confidentiality are central to discussions about using public health surveillance data because this information typically is collected without the consent of the individual. With HIV in particular, concerns about stigma, confidentiality, and potential loss of privacy resulted in much controversy around the implementation of name-based HIV surveillance in the 1980s through the early 2000s. As a result, some health departments delayed implementing HIV case surveillance and strictly limited the data it collected.
These concerns, in addition to the lack of available treatment for HIV at the time, resulted in limited implementation of traditional disease control and prevention interventions for HIV in many areas. In some jurisdictions, HIV-affected communities supported name-based reporting of HIV diagnoses for surveillance only if health departments would not use the information to contact individuals for public health follow-up. Although past practices should not preclude the implementation of Data to Care programs, health departments should take the unique historical context of their jurisdiction into consideration when implementing new methods and considering using HIV surveillance data in new ways.
The availability of life-saving treatment and the possibility of preventing further HIV infections are compelling reasons to reconsider the use of surveillance data to facilitate linkage and re-engagement through traditional and more contemporary infectious disease control strategies. Implementation of these programs will require addressing privacy concerns and continued engagement with affected communities and healthcare providers to maintain trust and increase acceptability of proposed methods.
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Maintaining public trust is central to the mission of all public health activities. Reviewing ethical considerations when implementing new programs can help ensure trust and community support. In the case of HIV surveillance, public health programs engaged communities early on and earned their trust by using approaches that preserved confidentiality while collecting and providing needed data. Programs developed strict security and confidentiality protections to ensure proper protection of personal information reported through surveillance. This provided the important foundation for the high-quality, accurate surveillance data used to monitor the impact of HIV both at the national and local levels today. The same processes are foundational for the continuing evolution of HIV-related public health programs and to ensure the success of these programs going forward.
Some benefits of reviewing ethical considerations include:
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- Building and maintaining credibility and public trust,
- Fostering consensus and resolving values conflicts respectfully,
- Making decisions where methods might be new or science might be limited and/or uncertain,
- Justifying choices where diverse opinions prevail, and
- Increasing awareness of stakeholder and community interests regarding public health practices.
Several models of ethical decision-making in public health might provide practical guidance for decisions on HIV surveillance data use. The following steps outline a general process (13):
- Begin by identifying the public health ethics issues in the specific situation or proposed activity, including those related to risks and benefits.
- Identify the public health goals, stakeholders and their respective values, and any precedent cases.
- Generate and compare different options or courses of action and the ethical rationale for each. Choose the best option and justify the chosen course of action.
- Evaluate the selected action to determine if the desired outcome was achieved.
Additional training tools developed by CDC for state and local health departments are available to strengthen public health ethics capacity at the local level. The CDC manual Good Decision Making in Real Time: Public Health Ethics Training for Local Health Departments
includes an introduction to public health ethics; relevant case studies, including a specific case study on new uses of HIV surveillance data; suggestions for integrating ethics into health departments; and additional resources. Back to Top
Surveillance data should be collected, held, and used for legitimate public health purposes, including injury prevention, disease mortality, health promotion, needs assessment, policy development, and emergency response. Uses of HIV surveillance data to facilitate linkage to and re-engagement in HIV care should conform to state and local laws. Even where law permits these activities, health departments must engage providers and patients to address concerns and develop arrangements for using HIV surveillance data that stakeholders will find acceptable (14).
Public health ethics frameworks provide concrete principles and values on which to base actions and review new uses of surveillance data (14-17). Principles used in biomedical research—such as beneficence, which includes the obligation to act to maximize benefits and reduce harms; respect for persons, which relates to autonomy and includes giving due consideration to an individual’s ability to make their own decisions and to act upon them; and justice, which includes giving due consideration to how fairly both benefits and burdens are distributed—are particularly useful for considering applications of new uses of HIV surveillance data (14, 16). For example, health departments can enhance autonomy and show respect for persons by implementing program methods that allow individuals to make choices on how and when they will be contacted.
Health departments also can use “justificatory conditions” (16, 17) to think through ethical questions and decide on appropriate courses of action as well as consider the effectiveness of the proposed activities. For example, when thinking through methods for following up with individuals, departments should consider whether the proposed methods will allow them to locate and contact individuals effectively. Additionally, they also should consider if the benefits of the proposed activity outweigh any risks or infringement on individuals (proportionality). A general example is whether the benefit of contacting a patient (e.g., facilitating their access to treatment or re-engaging in care) outweighs any risk to the individual (e.g., inconvenience of being contacted, risk of loss of confidentiality, risk associated with not being on treatment).
Because surveillance data is obtained without consent of individuals, methods for contacting persons should involve the least intrusive methods. For example, some health departments work with providers, obtaining permission to follow up with their patients on their behalf. Upon initial contact, the patient might consent to further contact by the health department and choose the best method for that contact.
Health departments also should consider whether the use of the proposed method is necessary or if there are less risky alternative methods they can use to achieve the same goal or end. Departments should ensure that they conduct new activities with the least infringement on a person’s autonomy and privacy. Finally, to ensure public trust and accountability, health departments should take adequate steps to ensure justification by the public, which includes engagement of stakeholders before undertaking changes in activities. Health departments can increase accountability when their policies and procedures are well-documented.
The Ethics Toolbox for New Uses of HIV Surveillance Data provides a listing of some example principles and values that health departments might find useful for guiding discussions on new uses of HIV surveillance data as well as examples of how to apply these uses in practice. Additionally, Sweeney et al. (17) describe ethical, procedural, and strategic considerations using practical examples of activities conducted by several health departments currently using HIV surveillance data to contact persons identified as needing assistance with initiating or returning to care.
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- Centers for Disease Control and Prevention, Public Health Ethics Committee. Ethics consults in public health. Atlanta, GA: Centers for Disease Control and Prevention, 2009.Back to Text
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- Sweeney P, Gardner LI, Buchacz K, Garland PM, Mugavero MJ, Bosshart JT, et al. Shifting the paradigm: Using HIV surveillance data as a foundation for improving HIV care and preventing HIV infection. Milbank Quarterly 2013; 91: 558–603. Available from: http://onlinelibrary.wiley.com/doi/10.1111/milq.12018/full, accessed November 6, 2013. Back to Text