Young people share experiences at the Curious Minds Workshop on Health Data Governance

The Children and Youth in Broadcasting, Curious Minds Ghana which aims at promoting
the development of young people through meaningful engagements interacted with
youth and health officers from different institutions on health data governance in
Ghana. This event was in Tamale in the Northern Region, and as part of the global
commemoration of Digital Health Week which was from 10th - 16th October 2022.
The workshop and colloquium organised to provide more insights into the digital health
agenda for all, brought together youth advocates from various CSOs, students, data
and information managers, and health professionals, among others.
In a presentation by Michael Tetteh Doku who is the project co- lead in this
engagement, it was emphasised that as health systems get more digitised, there is the
need for a standardised framework which countries can comply with, right at the
global front. That is to say, a global health data framework is needed to govern the
digital health system across the different countries, especially those that are member


States of the World Health Organisation.
He further presented the three objectives of the digital health principles which included;
- Protecting people. Thus, protecting individuals and communities to build trust in
data systems and to also ensure data security.
- Prioritise equity, which is to promote equitable benefits from health data,
establish data rights and ownership as well as
- Promote health value by facilitating innovation in the process of using health
data
Meanwhile, participants in group discussions and presentations expressed their worries
with regards to their health data and its governance at the various health facilities in
the region and other parts of the country based on the experiences they have had.
One of the statements in the presentations was that “we give out a lot of information
without knowing where it ends and are concerned because people are easily
stigmatised in the kind of cultural environment we are in”. While others made it clear in
their submissions that they mostly do not have access to their own data after they have
been collected and sometimes, have little to no idea of the conditions they are diagnosed with.


Further interactions revealed that participants cared about their health data especially,
who is collecting it, the means of collection and why it is being collected, after they
have received the services they require because the urgent need for healthcare in
many severe instances becomes much more important than anything else. Some of the
worrying experiences was how certain clients do not get any access to their data to
know what their conditions are after gaining consciousness in the process of service
provision.
A health information officer that participated in the workshop however clarified that,
the information provided by the clients in the health facilities often ends with the
facilities but have different departments collecting and storing or securing. Therefore,
individuals can be sure of who is keeping the data but with issues of cyber security and
crime, the systems are not so robust to ensure absolute safety and protection of
patients and their data because some providers and personnel responsible for the
security of the data end up breaching the ethics. Aside from that, he explained that the
Ghana Health Service has some systems in place to keep the data collected in the
public facilities but that differs from the softwares and systems used by the private
entities.
In the quest to improve the health data governance because digital health is
becoming the norm of the day, participants in the workshop suggested that the dignity
of clients must be a priority to avoid subjecting anyone to stigma because of conditions
society term as shameful.
Also, agreeing that once the information is given out, there is not much control over it,
they require that some level of ownership is given to them in a form of seeking consent if
the health data would be used and should mostly be disclosed without the individual's
identifiable details.
The colloquium and workshop also saw the young people from the different institutions
as advocates agreeing to a youth statement that calls on the Minister of Health to
advocate for the country to sign onto the draft Member State Letter, to be submitted to
the WHO in requesting the Board for the inclusion of health data governance and
proposed health data governance resolution, on the agenda of the Executive Board Meeting in January 2023 and the World Health Assembly in May 2023.