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My Data Our Health

Launching a public conversation on data privacy and personal responsibility for collective well being

According to some estimates 30% of all data produced is generated by the healthcare industry. Yet most people are still unaware of how this data is collected, who is collecting it, where it is being stored, what it is being used for, and why. As individuals our rights to own and control our health data and our responsibilities to make this available to health planners and researchers, are not clearly defined or implemented across most countries.

TNW is launching the My Data Our Health campaign on health data and our ownership over it with Transform Health. We are inviting our community to join us and to take part in the public conversation on health data on the following questions:

  • Who determines how our health data is collected, managed, stored and disposed of?
  • What are the limits of this authority?
  • How can we ensure this data is being used for public benefit purposes?
  • How much access and control do and should individuals have over their health data?
  • How can we ensure this ownership and control is respected and protected?

“ Currently we have a system of health data extractivism where individuals hand over their data and then lose control over this most intimate information,” said Mathilde Forslund, Executive Director of Transform Health. “We need stronger regulation underpinned by ethical and human rights principles, that enshrine in law the rights and responsibilities of individuals in relation to their health data. My Data Our Health hopes to contribute to that outcome. ”

“ At the heart of the My Data Our Health campaign is the issue of trust in those collecting and using our health data, and ensuring it is used to keep us healthy – now and in the future.” said Joan Chamungu, Executive Director of Tanzania Network of Women Living with HIV and AIDS(TNW+). “Effective health data governance is necessary to create trust between individuals and institutions and between institutions – for example, to facilitate the sharing of data between healthcare organisations. ”

How can you engage in the campaign?

1. Where’s My Data?

Take the Where’s My Data? campaign action action to contribute to the conversation on how much control we have over our health data and digital health information.

Go to your usual health centre and ask for your electronic health records or digital health information. Film a video sharing your experiences of what happens next.

Your experiences will be shared across the world to influence advocacy and public perception. Interested? Sign up!

SIGN UP FOR WHERE’S MY DATA?

2. Survey: How much do you know about your health data?

Take a 5 min anonymous survey on your health data. Anyone can take the survey, so share it around!

TAKE A 5 MIN SURVEY

Location of implementation?

Dar es Salaam (Ubungo District, Kigamboni District, Kinondoni District, Ilala District and Temeke Districts)

Who do you work with?

Adolescents, Girls and Young Women Living with HIV, women in all diversity living with HIV, MOH, Non State Actors NGOs, CBOs, KVP Forum, Members of Parliament

Project summary

Main activities:
  • To organize a half day sensitization meeting with 25 members of the TNW+ and brief them on the Where’s My Data? Action, using the document provided by transform Health.
  • To provide small stipends and support for the 25 women to start the process of approaching their health facilities to access their health data, particularly their digital health data.
  • Support women record their experiences by video, using a phone and send this to Transform Health.
  • Write up a summary of the women’s experiences of trying to access their health data and work with partners to present this to the media and to politicians.
Outcome:

Women and AGYW living with HIV in all their diversity are aware of the issue of health data governance and able to communicate their own experiences of trying to access their health data.  

Leverage the stories of women and girls who took part in the Where’s My Data? Campaign’s action and generate a public debate on health data governance through social and mainstream media.

Feedback information to partners and to Transform Health and continue promoting the issue through social media and through engagement with parliamentarians, partners and others.

Background and what is the challenge or opportunity:

My Data Our Health is a mobilisation campaign that involves WLHIV, political leaders and media personnel.  The Challenge faced by PLHIV and AGYW HIV is accessibility of individual health data that has an impact on their daily lives. It has not been easy to control and own their health data. They are not aware who determines how the data is collected, managed, used, stored and disposal of.  They are not sure who is the ending user of the data, if it is for public benefit purposes. 

n 2016, a Data Protection Act was passed by the Parliament of Tanzania constitutionalizing the data rights of individuals.  Even though this legislation has existed for almost six years there is very little awareness of it. The Act  pronouncements on data ownership but there is no clear approach in accessing and it  Make  difficult to  identify the extent to which individuals own their data

The opportunity available is the existence of the network of women living with HIV that can coordinate them to campaign on My Data Our Health.  The existence of Parliamentary HIV and AIDS committee members who can be part of the advocacy team.   They want to reclaim their rights over the data. My data Our Health campaign is another opportunity for HIV, AGYW LHIV to engage with wider public, media, politicians and government to bring changes in the way data are collected, used and disposed of. The campaign will effectively engage the target groups and public.

Outcome:

Increase demand for Women and AGYW living with HIV in accessing their health data and generate a public debate on health data governance.




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