Topic: Public-Private-Partnerships on Data and Health Innovation for Health Equity
Q: Which PPP initiatives on data and health innovation for health equity you have come across in your work?
A: First, I would like to talk about the first part of the question:
Harnessing the potential of Big Data in healthcare should include :
(1) partners working across the data chain—partners that are able to produce health data, analyzing data and visualize analytics using research results or creating value from the data produced by the public sector.
It is challenging but doable. The partnership requieres transparency (from public sector to expose the data) but also ownership that extend to or resulting in to intellectual property or products that should remain products of parties engaged in PPP.
However, few points need to be specified from the beginning while entering the PPP are related to:
(1) “commercialisation of public health data” which is increasing nowadays in private sector. Using
any form of agreement “DUA, NDA etc.) and consent forms is the first step
(2) Power dynamic between North and South around the ownership of the data – including personal data as well who is financing the research project.
(3) Lastly, the use of DPP Law in Kenya and now in Rwanda clearly defines the role of data controller and data processor in research.
This second step is critical for transparent PPP.
It is worth it mention that in all cases – Public sector needs private sector or civil society organizations to consumme their HMIS, routine data that are not exploited fully or with a critical eye to reinforce existing policies or course correct them.
Understanding these dynamics will help countries in development Deliberative Framework that can support ethical governance around PPPs involving with big health data.
In addition, In Rwanda-but also in most African countries, we will need to define what sensitive data means in such PPP.
During our clinical trial that started this November- 2 variables came as strongly supported as sensitive data: names and Medical Record Numbers
However, in USA, under the office of human subject research (Johns Hopkins Univ)- 18 identifiers must be removed when it comes to data sensitive use and equity
Now, on the second part of the question, the PPP initiatives and health innovation for health equity will need to dig and mine data using equity’s lens
Most of the programs and health data systems do not necessary pay attention on the deasaggregation of data received per vulnerable group (such as pregnant mothers, adolescents, childern U5, refugies, prisonners, aslim seekers etc.).
The European Union has started also commitment to supporting a “data-driven economy” using “big health data”
Lastly, as I conclude, we should think about few upcoming challenges related to the public and patient’s engagement and rights of patients during all negotiations while developing and implementation PPP