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

Sat, 29 Oct 2022 Source: Joseph Ayinga-Walter

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.

Source: Joseph Ayinga-Walter