Executive director of Jamaica AIDS Support For Life (JASL), Kandasi Livermore has taken issue with the Data Protection Act, saying that there is a need for explicit legislation on data protection for people living with human immunodeficiency virus (PLHIV) and other sexually transmitted diseases (STIs) in Jamaica.
Speaking on day two of the Regional Meeting on Ending AIDS in the Caribbean in Kingston, which looked at the strengthening of strategic information collected from PLHIV, and the subsequent accountability for that information, Livermore highlighted legislation which could breach privacy rights of PLHIV.
“What we’re seeing is that if at JASL we have information that makes someone criminal, so what happens if a judge should say I order the release of someone’s file? We have legislation that says buggery is a crime and prostitution is a crime. We have to go back to legislation because we are documenting persons’ vulnerabilities and people are sharing with us their private information that we have in our systems. In order for us to practise real public health and do no harm to these individuals, then we have to come up with real strategies to protect people’s information,” Livermore said.
Last year, former Minister of Science, Energy and Technology, Dr Andrew Wheatley tabled in Parliament the Data Protection Act, considered key legislation which seeks to protect a citizen’s right to privacy.
In January this year, a joint select committee (JSC) in Parliament was set up to review the provisions of the proposed Data Protection Act, part two of which speaks to the rights of data subjects. But Livermore said this did not address the specific protection of data collected from vulnerable communities served by JASL.
“We have made a submission to parliament. Right now the wording in the Act is very vague and so it is not giving us the specific protections that we are asking for. It would be very useful if, for example, the health side of government also asked for the same thing — seeing the implications that it can have on our response to HIV, ” Livermore said.
Speaking specifically to the experience and challenges in Jamaica of developing a cascade for key populations, that is, how crucial information for decision-making is passed onto the relevant health organisations, Livermore explained that persons among the key populations whom JASL serves, including the LGBT community, are concerned that their private information could be given to the Government.
Livermore explained to regional stakeholders that, “Jamaica AIDS Support For Life does not have a silo system; we too work in the national system. For example, we have our database for HIV prevention services and for treatment services and we follow through monthly, complete our reports, and we input our information; so it is very easy for us to generate a cascade. But [the] real issue around this development of the cascade is our data protection.
“Long before there was key population was a thing, we recognised that we were working with persons who were more vulnerable, and we felt that it was very necessary to document these vulnerabilities. And it ended up that we had information that could now be used to say who we were serving.
“In Jamaica, like 10 years ago, people were talking about they heard that we were creating a database of all the gay men in Jamaica, but it is true now — and already in the community, on the ground, people are scared that we are putting the information that we have into this national database,” Livermore said.
“So how are we going to ensure that we are not adding levels of stigma and discrimination and levels of alienation, and pushing people away from services? And in the era of talking about how I am protecting my client’s privacy and confidentiality, Jamaica AIDS Support For Life is a key population-friendly organisation that stamps out every form of stigma and discrimination, but yet I can be asked to breach persons’ privacy and confidentiality. These are the challenges that we are grappling with,” she emphasised.
Livermore underscored to the regional stakeholders present at the meeting that their “voices must be strong around legislation that seeks to protect the data so that the clients are at no greater risk than they already are”.
Meanwhile, as it relates HIV response in the Caribbean and Latin American countries, the Pan American Health Organization (PAHO) recently launched the Information Systems for Health (IS4H) project, which seeks to support countries in defining strategies, policies, and standards for shared information systems across agencies and best practices in health data management, for improving decision-making.
PAHO’s subregional programme coordinator for the Caribbean, Casimiro Dias, also speaking at Friday’s meeting, spoke about health systems and services and the need for partnership between stakeholders and Government in using data for policymaking, while also protecting citizens’ sensitive information.
“The discussion about information systems has not only to do with protection but it also has to do with the Government. This is a very high-level discussion on how we engage with Government and tell them that we need to get access to information, make decisions from people, and at the same time we have to ensure that the citizens’ right to privacy is also protected.
How can we develop this policy dialogue at the highest level to ensure that people trust sharing data and ensure that the citizens’ rights are covered? The Government, the policymakers need to ensure that the citizens’ rights are protected,” Dias said.
However, Livermore insisted on a balanced approach, adding that, “because of the data that I have at JASL we have been able to tailor our programmes, and we are learning so many things from it. But at the same time, we have to balance di ting. So while we talk about IS4H, let us make sure that we are protecting the people. At the end of the day we are talking about individuals with their private information, and we have to ensure that we do no harm,” Livermore stated.