Connie Henson1,2, Boe Rambaldini1,3, Bronwyn Carlson1,4, Monika Wadolowski2, Carol Vale5, Kylie Gwynne1,2. 1. Centre for Global Indigenous Futures, Macquarie University, New South Wales, Australia. 2. Faculty of Medicine Health and Human Sciences, Macquarie University, New South Wales, Australia. 3. Poche Centre for Indigenous Health, The University of Sydney, New South Wales, Australia. 4. Faculty of Arts, Macquarie University, New South Wales, Australia. 5. Murawin, Australia.
Abstract
Background: Digital health offers a fresh avenue to address health disparities experienced by Aboriginal and Torres Strait Islanders. Despite the scant evidence about how Aboriginal and Torres Strait Islanders access and use health technology, the Australian government has prioritised research that uses technology to enable people to manage their health and promote better health outcomes. Older Aboriginal and Torres Strait Islander women are cultural leaders in their communities, enabling them to provide valuable insights about the safety and efficacy of health care messaging. However, no research has engaged older Aboriginal and Torres Strait Islander, women as partners in digital health research. Objective: This paper provides a protocol for co-designed translational research that privileges older Aboriginal & Torres Strait Islander women's cultural expertise to design and test a framework for accessible, culturally safe and feasible digital health technologies. Methods: This mixed-methods research project will use the collective impact approach, a user-centred, co-design methodology and yarning circles, a recognised Indigenous research methodology. A series of yarning circles with three different communities will elucidate enablers and barriers to access health information; co-create a framework clarifying what works and does not work for digital health promotion in their communities; and test the framework by co-creating three digital health information programs. Conclusions: Privileging the cultural expertise of older Aboriginal and Torres Strait Islander women will provide a novel perspective and vital guidance that end users and developers can trust and rely upon to create and evaluate culturally safe and efficacious digital health promotion programs.
Background: Digital health offers a fresh avenue to address health disparities experienced by Aboriginal and Torres Strait Islanders. Despite the scant evidence about how Aboriginal and Torres Strait Islanders access and use health technology, the Australian government has prioritised research that uses technology to enable people to manage their health and promote better health outcomes. Older Aboriginal and Torres Strait Islander women are cultural leaders in their communities, enabling them to provide valuable insights about the safety and efficacy of health care messaging. However, no research has engaged older Aboriginal and Torres Strait Islander, women as partners in digital health research. Objective: This paper provides a protocol for co-designed translational research that privileges older Aboriginal & Torres Strait Islander women's cultural expertise to design and test a framework for accessible, culturally safe and feasible digital health technologies. Methods: This mixed-methods research project will use the collective impact approach, a user-centred, co-design methodology and yarning circles, a recognised Indigenous research methodology. A series of yarning circles with three different communities will elucidate enablers and barriers to access health information; co-create a framework clarifying what works and does not work for digital health promotion in their communities; and test the framework by co-creating three digital health information programs. Conclusions: Privileging the cultural expertise of older Aboriginal and Torres Strait Islander women will provide a novel perspective and vital guidance that end users and developers can trust and rely upon to create and evaluate culturally safe and efficacious digital health promotion programs.
Keywords:
Aboriginal; Digital health; Indigenous; Torres Strait Islander; co-design; cultural determinates of health; cultural safety; health disparities; social media; social networks; user-centred design
Technology innovation is revolutionising health and medicine. The World Health
Organisation has cited the rapid advances in digital health technology as having the
potential to provide cost-effective care to remote and underserved populations.
Likewise, the Australian government has prioritised research that uses
technology to enable Aboriginal and Torres Strait Islander people to manage their
health and promote better health outcomes for their communities.[2,3] Improving health outcomes is
important because Aboriginal and Torres Strait Islander people experience
significant health gaps compared to the broader population, including dying from
avoidable causes at three times the rate of other Australians.
Digital health technology offers a new path to address these disparities.
However, accompanying this opportunity is evolving threats created by misinformation
or misuse of digital health information. Moreover, access to hardware and Wi-Fi is
not equitable in Australia, including access and affordability, particularly for
people relying on month-to-month pre-pay data plans. Finally, these harms are
amplified by systemic racism that has historically informed the design of western
health systems and practices and has dictated the definition of good health and what
is necessary to attain it.It is a matter of ethical urgency that we ensure that innovations in digital health
do not perpetuate or exacerbate the socio/political barriers that have contributed
to health disparities experienced by Aboriginal and Torres Strait Islander people in
Australia. The myriad of social/political factors that impact the health and
well-being of Aboriginal and Torres Strait Islander people is well-documented and
essential to keep in mind as we evolve digital health technology. Some of the
social/political factors impacting Aboriginal and Torres Strait Islander health
include racism and marginalisation[5-7]; entrenched inter-generational trauma
; discrimination
; inequalities in society
; disconnection from community and country
the historic and ongoing effects of colonisation[5,6,8] which contributes to distrust
and subsequent reluctance to access services.
In addition, factors specific to the health system include lack of access to
health care services
; inadequate access to culturally competent health carers[6,13] which contributes to low
trust and a reluctance to ask questions or even seek health services
creating additional barriers to self-management. These factors and others
have led to the normalisation of premature death
and the inevitability of disease.[8,12,13]Moreover, inadequate public health communication creates a significant barrier to the
utilisation of services.
Communication that is not culturally safe (i.e. is insensitive to an
individual's cultural needs, diminishes the person's ability to raise concerns,
disempowers cultural identity or does not recognise the colonising context as significant
) may impact health literacy which is associated with lower engagement in
prevention services and practices, higher hospital readmission, poor understanding
and adherence to medical advice and lower health self-management.
These studies highlight the value of stronger, culturally competent
communication and an urgent need to eliminate these health and well-being barriers
within the health system.Crucially while ensuring we do not minimise or neglect to address these negative
factors and recognising that racism and ongoing effects of colonialism continue to
impact the health of Aboriginal and Torres Strait Islander people, we must shift
from an exclusive focus on deficits and barriers to an asset-based lens. This shift
in focus is in keeping with the Lowitja Institutes’ research[17,18] which
emphasises the protective role of culture. For example, Salmon et al.
identified six key cultural domains associated with health and well-being for
Aboriginal and Torres Strait Islander people: connection to country; Indigenous
beliefs and knowledge; Indigenous language; family, kinship and community; cultural
expression and continuity; and self-determination and leadership. Other studies have
demonstrated that positive cultural factors such as connection to country
; emphasis on family and community relationships, and physical expressions of culture
contribute to Aboriginal and Torres Strait Islander health. Moreover, recent
participatory action research projects have identified and leveraged positive
factors within health care programs, often building on community assets to
strengthen clinical and prevention services. Specifically, recent studies have
identified the beneficial role of explicit recognition and celebration of culture
embedded as a central precept of health programs[8,12]; incorporation of fluid,
non-linear, time-insensitive, flexible program delivery
; focus on self-responsibility and empowerment.[6,8] Aboriginal health care
providers have similarly noted the essential need for patient-centred care that
incorporates and honours Indigenous knowledge; ways of being and doing.Taken together, these findings highlight the fundamental need to incorporate local
culture, build on local community resources and point to the criticality of centring
Aboriginal and Torres Strait Islander voices from inception through the
implementation of all digital health and health communication programs. Moreover,
the shift to digital health provides an avenue to proactively shape and
fundamentally shift the overall approach to health.Aboriginal and Torres Strait Islanders are early adopters and active users of
technology. Taylor
found 60–80% of residents of one remote community over age ten reported
owning a mobile phone and using it regularly. In a 2016 review, Rice found despite
the range of living situations across Australia, Aboriginal youth in particular
prioritised the use of social media, including Facebook.
Carlson and Dreher noted that active use of social media facilitates
Aboriginal and Torres Strait Islander people to connect locally, nationally and
globally, providing cultural connectivity and visibility to Aboriginal and Torres
Strait Islander issues never before available.
Likewise, social media has also been a catalyst for innovation by Aboriginal
and Torres Strait Islander people. For example, Carlson and Dreher
has highlighted the synergy between Aboriginal and Torres Strait Islander
culture and innovation, explicitly noting innovation in using social media for
empowerment and political purposes. Fundamental values and practices of Aboriginal
and Torres Strait Islander people such as connection, self-determination and
empowerment are also underlying tenets of a digitally connected world.The Aboriginal and Torres Strait Islander health sector was an early adopter of
social media for advocacy, public health promotion and community development.
Aboriginal and Torres Strait Islander adults engage with e-health tools to
address various health issues, including nutrition, smoking and mental
health.[25-28] Carlson et al.
identified five types of help-seeking related to health and well-being,
including soliciting support and information; joining health-related groups; using
direct messaging; sharing inspiring content and seeking formal sources of health
information. McPhail-Bell et al. highlighted the importance of building community
online and offline and the value Aboriginal and Torres Strait Islander people placed
on flexibility, trustworthiness and cultural appropriateness in determining the
platform's usefulness.
In analysing the small body of social media health promotion research that
includes Aboriginal adults, Carlson et al.
suggested that social media was a potential avenue for health promotion that
was accessible and respectful of Aboriginal and Torres Strait Islander ways of
being, they noted themes that reflect principles of reciprocity, self-determination,
relationality, culture protocol and cultural strength. In keeping with Carlson et al.
observations regarding the synergy between social media and Aboriginal and
Torres Strait Islander ways of being, Rice et al. in a recent review of the
literature, identified several themes related to how and why Aboriginal and Torres
Strait Islander young people use digital technologies, including community
connection, identity, power and control. The cultural compatibility of social media,
specifically the multimedia nature of the medium and its compatibility with orally
and visually focused cultures, was also noted as a reason for Aboriginal and Torres
Strait Islander youth's high usage.Elders and older Aboriginal and Torres Strait Islander people are trusted and
respected in their communities. They have traditionally and continue to play crucial
roles in transmitting cultural knowledge and tradition.
Older Aboriginal and Torres Strait Islander people have adapted to
contemporary circumstances, investing time and effort to help their communities in
ways that impact health and well-being, including role modelling, instilling and
shaping identity, building resilience and educating and supporting young people.
Busija et al.
identified seven roles of Elders in their communities: caring for youth,
safeguarding identity, building community resources, passing down knowledge,
community relations, intergenerational connectedness and dealing with racism.
Moreover, Warburton and Chambers
highlighted critical roles for women in shaping and maintaining culture and
influencing younger people through sharing stories, role modelling, direct care and
identity formation, including links to country, language and knowledge of
dreaming.The way knowledge is passed down and shared both broadly and specifically in
Aboriginal and Torres Strait Islander communities are changing rapidly. Advances in
technology and electronic sources have become a central source of health
information. As early as 2003, Eysenbach and Kohler
found close to 5% of all internet searches were health-related. Reliance on
the internet for health information accelerated during the COVID-19 pandemic. For
example, Du et al.
found searches for health-related information were associated with increased
prevalence of COVID-19 in those communities. Information sharing was also prevalent
during the pandemic, with Rovetta and Bhagavathula
finding over two-thirds of Instagram users using COVID-19 and coronavirus as
hashtags to disperse health-related information.During the pandemic, research focused on the role of social media in health also
increased. Still, only a tiny proportion of that research explored the efficacy or
safety of disseminating health information. For example, in a recent scoping review
exploring the roles social media played during the first year of the pandemic, Tsao
et al.
found that 59% of the studies in their review focused on assessing public
attitudes. Less than 25% of the studies in this review examined the dissemination of
COVID-19-related information. Less than 10% investigated the quality of recommended
prevention behaviours. Although several papers in this review identified
contributions social media made to disseminating helpful information, many of these
studies identified various harms, including misinformation, fake news, conspiracy
theories, racism and ageism. Several of the globally based study populations cited
in this review included Australian users. However, only one of the 81 articles
reviewed in this scoping review specifically identified Australian users, and
Aboriginal and Torres Strait Islander people were not mentioned in this paper.
In another scoping review, only five studies examined the impact of social
media campaigns on Aboriginal and Torres Strait Islander health.
Despite the paucity of studies, Walker et al. noted a consistent theme of
self-empowerment. They highlighted the importance of end users, researchers and
funders co-creating programs to improve the health of Aboriginal and Torres Strait
Islanders. They also noted the need for research and the development of social media
health promotion programs that incorporated Aboriginal and Torres Strait Islander
perspectives and culture.Despite the accelerated uptake of all types of digital health technologies, research
examining what is working, not working and why is inadequate. We do not understand
how to effectively deliver healthcare messages for Aboriginal and Torres Strait
Islander people via social media.This gap is significant because of the rapid expansion in the use of social media for
health promotion. Moreover, forced lockdowns during the COVID-19 pandemic have
rendered accessing health information online essential. Furthermore, there is clear
evidence that integration of culture is associated with health program
effectiveness, but unfortunately, there is a long history of healthcare messaging
being created without the input of cultural experts.Aboriginal and Torres Strait Islander women's strong influencing and cultural
leadership role in their communities
and as Indigenous influencers on social media,[24,40,41] positions them to provide
valuable perspectives and insights associated with the safety and efficacy of health
care messaging. However, no research has specifically engaged Aboriginal and Torres
Strait Islander women as consultants or partners in assessing cultural safety or the
effectiveness of social media health promotion programs.Further work is needed to understand which types of messages and which platforms are
most effective and why to shape health-promoting behaviour. This study will address
these gaps by prioritising older Aboriginal and Torres Strait Islander women's
cultural expertise and position within their communities to design and test a
framework for assessing and developing culturally safe and digital health
programs.Purpose and Aims: This project will test the hypothesis that older
Aboriginal women can and do use technology to enhance health knowledge in their
communities.Aims:To understand how Indigenous women in high income countries use social
media to inform and influence the health of their communities (method:
systematic review)To identify how Australian Aboriginal women use social media to inform
and influence the health of their communities (method: yarning circles
and thematic analysis)To develop a working model of how Australian Aboriginal women use and
could use social media to inform and influence the health of their
communities (method: yarning circles and thematic analysis)To test and refine the model using three case studies linked to existing
co-design work with Australian Aboriginal communities (method: yarning
circles, surveys, data analysis)
Methodology
This mixed-methods translational research protocol will be conducted over two years
and includes two parts: part one – Co-identify and co-develop a framework
crystalising co-produced knowledge and part two-Test and refine the framework using
three case studies. This protocol has received ethics approval, includes Aboriginal
and Torres Strait Islander governance, uses collective impact a decolonising
methodology and yarning circles a recognised Indigenous research methodology.
Ethics
This protocol has received ethics approval from The Aboriginal Health &
Medical Research Council (AH&MRC) on 1 December 2021 # 1862/21.
Aboriginal and Torres Strait Islander governance
Health research methodology has historically disempowered Aboriginal and Torres
Strait Islander people. It has marginalised or completely excluded Aboriginal
and Torres Strait Islander ways of thinking, learning and doing science.
Likewise, community priorities have not informed the direction of health
research, resulting in programs that don't meet the community's needs.The inflexion point created by the shift to digital health is an opportunity to
significantly upgrade the way we do health research by incorporating Aboriginal
and Torres Strait Islander governance into all health research projects. To this
end, we will establish an Aboriginal Project Governance (APG) group in each of
our three research communities. We will ask for volunteers from the community to
serve as APG members, with the only criteria being that they are members of the
community and interested in participating in the governance of this research
project. An Aboriginal or Torres Strait Islander woman who is a member of the
community will chair the APG and will be paid for her time. The APG chairwomen
will be required to have experience in facilitating online group discussions and
will be made aware of the time commitment associated with the APG chair role.
She will facilitate monthly meetings and have a rolling set of responsibilities
such as: clarifying community-specific needs, advising on ethics and participant
recruitment and ensuring culturally competent verbal and written informed
consent for each participant. The APG chairwomen from each of the three
communities will meet regularly via video conference initially to refine the
high-level questions we will use in the yarning circles and to agree on the
overall approach to facilitation of the yarning circles. Ongoing video meeting
with the APG chairwomen will include discussing progress, concerns, reviewing
consolidated data summaries and providing joint input to the research team. In
addition, reviews from the APG chairwomen of all research summaries, papers, and
presentations will be provided to the each of APGs for validation before
dissemination.
Collective impact
This mixed-methods research will use collective impact, a
decolonising methodology that prioritises Aboriginal and Torres Strait Islander
perspectives. Collective impact uses a structured process to promote community
engagement and leadership from inception through implementation and completion.
Collective impact has been validated with Aboriginal communities for health
program design and research.[42,43] There are three
preconditions for collective impact: (1) Influential community champions; (2)
complex problem; and (3) an understanding of why the existing solutions are not
working. Once these are met, the process of interpreting evidence through a
cultural lens and bringing together knowledge and expertise to develop,
implement and evaluate solutions begins. Collective impact comprises five
elements: (1) establish a common agenda; (2) agree on measurement; (3) mutually
reinforcing activities (4) continuous communication and (5) backbone support, as
illustrated in Figure 1.
Figure 1.
Collective impact – five success elements.
Collective impact – five success elements.Together these five elements facilitate the synthesis of diverse perspectives to
develop innovative approaches to address complex challenges that have previously
eluded solutions. In addition, the collective impact approach enables
researchers to incorporate Indigenous research techniques that are culturally
safe, accessible and effective for all stakeholders, including yarning
circles.
Yarning circles
We will use yarning circles as a key technique to collect,
analyse and interpret data in this research. A yarning circle is a recognised
and validated Indigenous research method for qualitative research.[44,45] A yarning
circle is a discussion group whereby facilitators pose questions for
consideration and exploration, including reframing and reinterpreting the
questions themselves. The format will be a series of questions posed by the
facilitators to the group allowing for a non-structured discussion among the
group members. As illustrated in Figure 2, successive iterations of
yarning circles followed by data consolidation will ensure that everyone agrees
about what we have found in each stage before moving on to the next stage.
Figure 2.
Delineate how social media is used and develop a framework.
Delineate how social media is used and develop a framework.
Research communities
In addition to the research team, the partners in this research are three
communities of Aboriginal and Torres Strait Islander women. The communities in
this research will include intact communities of Aboriginal and Torres Strait
Islander women who use digital technologies as a regular form of communication
within the community. Two communities (An Aboriginal and Torres Strait Islander
business women's network and a community of Aboriginal and Torres Strait
Islander who form an ecosystem of entrepreneurial women committed to helping
each other succeed have pre-committed to participate in this research. Community
leaders have expressed dismay associated with the impact of misinformation poor
digital literacy on Aboriginal and Torres Strait Islander people. Each of these
communities has asserted an interest in using their collective impact to
influence health and well-being for Aboriginal and Torres Strait Islander
people. The research communities include Aboriginal and Torres Strait women from
urban, rural and regional Australia. A third similar community will be
recruited. Participants will be community members who range from middle age to
older adults who do not consider themselves to be ‘digital natives’.
Participant recruitment and consent
All aspects of recruitment will be co-designed with the APG. Once we have an
agreement on how to provide information and achieve consent in their community
the APG chair will provide information about the research to members of her
community and invite women, who express interest in the research and who are
Aboriginal or Torres Strait Islanders to learn more about the project.The initial information about the research project may be provided via phone,
email, website or through social media depending on the needs and habits of the
community. Women who express interest in participating will be provided a
detailed Participant Information Sheet, that includes a
description of the project i.e. who can participate; background information; how
the findings will be used; what is required for participation; potential risks
and benefits of participation. The names and contact details of the lead
researchers will also be included on the participant information sheet, as well
as information about the ethics approval for this project. After reading this
information sheet and speaking with the APG chair to answer questions and to
ensure she is fully informed about this project, the community member will be
asked to sign a consent to participate form. Potential participants are also
encouraged to contact the lead researcher if they want more information about
the project. This project uses a transparent, co-designed research approach,
thus the detailed protocol will be made available for any participants who
express interest.Participation in the research is 100% voluntary and participation is anticipated
to be interesting and desirable for community members. At each stage of the
project, participants will be asked if they wish to continue their participation
in the next stage and they are encouraged to make that decision freely without
any consequence for opting out at any point. The staged nature of the research
allows for participant replacement at any point without impacting the overall
integrity of the project.An additional component of this research will include a pilot test of the
co-designed health promotion program which will be pilot-tested with an online
survey. A social media survey (n = 150) will elicit the views
of Aboriginal and Torres Strait Islander people about the three programs
including what did they like/not like. The survey will be anonymous and
participants will self-declare their willingness to participate by clicking
proceed button, after reading a brief description of the survey. Participants
are free to abandon the survey at any point.
Study design
Part 1: Co-identify and co-develop a framework crystalising co-produced
knowledge
A co-designed Systematic review will identify the strengths and
gaps in the literature about how older Indigenous women in high-income countries
use social media. We will refine the research question and define search terms
through collaborative discussions with Aboriginal and Torres Strait Islander
co-researchers. Collaboration early will enable us to create a ‘common agenda’,
a critical success factor within the collective impact approach. It will also
set the tone for privileging Aboriginal and Torres Strait Islander perspectives
and ensure we address relevant research needs. We will pre-register the
systematic review on PROSPERO and will be guided in our reporting by the
Preferred Reporting Items for Systematic review and Meta-Analysis (PRISMA)
Protocols 2015.[46,47]In the second stage, as illustrated in Stage 2 of Figure 2 – a series of
yarning circles will identify how older Aboriginal and Torres Strait Islander,
women use and could use social media to inform and influence the health of their
communities. We will solicit information about the types of social media used
and for what purpose by asking broad, open-ended questions, such as: ‘What
digital technologies are you currently using?’ Follow-up questions will drill
down on each of the currently used technologies, for example, ‘What do you use –
Facebook, etc – for?’ ‘Do you use the emojis to respond to posts; which ones do
you mostly use, who do you share posts, with and when?’. The specific high-level
questions will be agreed with the APG chairwomen before the first yarning
circle. Consistent with yarning circle methodology the discussions will be fluid
and the chair women will have the autonomy to flexibly respond and intervene
with the participants in her community. After each session the data will be
consolidated and presented back as a starter for the next circle. The data from
across the three groups will be consolidated, presented to the APG chairs and
subsequently to each of the individual communities for reflection and
discussion. Iterations will continue until a consensus is reached.In stage 3 we will focus on developing and refining a framework that crystalises
the co-produced knowledge that has emerged. The first framework draft will be
created by consolidating and synthesising data from stages 1–2 using thematic
analysis with the APG chairwomen. Next, a series of iterative yarning circles
and revisions will refine the framework, which includes what the group believes
works and does not work for health promotion in Aboriginal and Torres Strait
Islander communities. We will then use the framework to inform the design of
three health promotion programs (Case studies) in Part 2 of this project.
Part 2: Test and refine the framework using three case studies linked to
existing co-design work with Aboriginal and Torres Strait Islander
communities
In stage 4, we will co-design, co-implement and co-evaluate three social media
health promotion programs, as illustrated in Figure 3. The first two social media
health promotion programs will inform community members about the availability
and value of participating in: (1) breast screening and (2) atrial fibrillation
(AF) screening programs. A third program will inform community members about
precision medicine, how it works, and why it may be relevant for Aboriginal and
Torres Strait Islander people. This information is essential because precision
medicine is becoming the gold standard for diagnosing and treating many cancers
and rare diseases but is typically not well understood by the general
public.
Figure 3.
Test and refine the framework using three case studies.
Test and refine the framework using three case studies.The co-researchers in each community will review and evaluate a range of
previously designed social media health promotion campaign materials, using the
framework created in Part 1 as criteria for evaluation. After each circle, the
information will be consolidated and presented back as a starter for the next
circle for refinement until an agreement is reached on a draft design. This
design will be pilot tested with an online survey. A social media survey
(n = 150) will elicit the views of a cross section of
Aboriginal and Torres Strait Islander people including men non-binary people and
other age cohorts about the three programs, including what did they like/not
like. The specific questions for the survey will be generated by the
participants, consolidated across the three groups, presented back to the
participants to discuss and refine and agreed with the APG chairs. The survey
will include questions such as: ‘Which aspects of the social media campaign do
you think are most/least effective? Why? ‘Which aspects of the social media
campaign did you like/dislike? Why? Which aspects of the campaign should we
change? Why?’ The survey will also include an anonymous baseline knowledge test
using non-identifying data where people self-declare eligibility. The knowledge
questions will include items such as ‘what was the key message of the social
media campaign from your perspective?’ And ‘Were there any other message that
you noticed? If yes what were those messages? The data from this survey will be
consolidated around the themes of what is working and not working in the draft
programs. Yarning circles will incorporate the data from the surveys and refine
the design of the campaign.In stage 5, we will co-design the social media campaign evaluation. Depending on
the social media platform chosen for the campaign, the metrics may include
impressions, clicks, likes, shares for posts. ‘Agreed Measurement’ is a crucial
success factor in the collective impact approach and will ensure transparency
and consensus about what is measured and how data is collected, stored, analysed
and used. Thus, the evaluation criteria (which social media metrics and
qualitative data should be collected) will be generated by the participants and
consolidated across the three groups, presented back to the participants to
discuss and refine. The final questions will be agreed with the APG chairs. The
data will be collected throughout the implementation and analysed upon program
completion. In stage 5b, summaries of consolidated data, analysis and
interpretation will be presented to the participants to reflect upon and refine.
Iterative discussions will continue until consensuses is reached. In stage 6,
each of the three social media health promotion programs will be co-implemented
in each community.
Analysis
The yarning sessions will be recorded and transcribed. The transcriptions will be
analysed using thematic analysis. At each stage, the themes will be presented
back to the participants for review and revision until consensus is reached.
Content data derived from the online surveys will also be analysed using
thematic analysis. Descriptive statistics will be used to summarise the data
collected through social media analytics which will also be presented to the
participants for review and incorporation into their yarning circle. We will use
QSR Nvivo12
to assist with data management and analysis. Findings from each step of
the project will be presented to the APG's within each community on an ongoing
basis, as part of the governance meetings. The APG's will review all manuscripts
before publication, ensuring cultural safety and Aboriginal and Torres Strait
Islander leadership and self-determination throughout the life of this
project.
Discussion
This paper presents a mixed-methods translational research protocol that will
privilege the cultural expertise of older Aboriginal and Torres Strait Islander
women to create and test a framework to guide culturally safe and effective digital
health program development. This is the first research project that will prioritised
older Aboriginal and Torres Strait Islander women's perspectives about health
technology. Prioritising their perspectives is important because Aboriginal and
Torres Strait Islander women are influential and provide strong cultural leadership
in their communities.[24,31,32,40,41] The women's status within their communities positions them to
bring a novel and valuable perspective about the health needs and priorities for
their communities. Likewise, they are in a position to envisage how women could
practically use technology to influence health. Moreover, privileging women's
perspective and deep cultural expertise ensures the research will be relevant and
benefit Aboriginal and Torres Strait Islander communities.The active participation and commitment intrinsic in the collective impact approach
promotes community capacity building and transferability by integrating local
culture and local health organisations’ practices into every aspect of the program
design. Collaboration, capacity building and transferability are essential for
research with Aboriginal and Torres Strait Islander people to ensure cultural
safety, efficacy and sustainability which has often been lacking in health research
with Aboriginal and Torres Strait Islanders.
Limitations
Participants in this research will participate via online meetings, which require
access to a device and an internet connection. Previous research has found that
even in remote communities mobile phone and social media use is high in
Aboriginal and Torres Strait Islander communities.[21,22] However, the requirement
for participants to have internet access may bias the sample towards people who
have easier access or are more comfortable with technology. Similarly, because
participants in this research will be volunteers, the sample may be biased
towards people who are attracted to the research topic, potentially limiting the
generalisability to Aboriginal and Torres Strait Islander people who have no
interest in health technology.
Knowledge to action
A key output is a framework that details how social media health promotion works
and does not work in Aboriginal and Torres Strait Islander communities.
Developers of digital health promotion campaigns can use this framework to
ensure their programs are safe and effective for Aboriginal and Torres Strait
Islander people.The framework will include recommendations that were found to be relevant across
the three research communities and will also highlight any specific aspects that
need to be tailored to individual communities. Using this framework will limit
the burden on Aboriginal and Torres Strait Islander people by consulting only
when specific local contextual issues need to be addressed by developers.The findings will be described in lay terms in written and video formats and
provided to participants, partners and community members. These lay formats will
make health science assessable, exciting and usable by non-scientists. And will
ensure the project provides immediate benefit to Aboriginal and Torres Strait
Islander community members. We will present the findings from this research to
the state and federal government to advocate for policy change to ensure that
digital health programs, including public health promotion campaigns in
Australia, are inclusive, culturally safe and effective for Aboriginal and
Torres Strait Islander people.
Conclusions
Health information is increasingly provided digitally. Likewise, the Australian
government has prioritised research that uses technology to enable people to manage
their health and promote better health outcomes. It is therefore a matter of ethical
urgency that these technologies are made safe and effective for all Australians. The
framework created and tested through this research will provide a path for greater
inclusion and safety for Aboriginal and Torres Strait Islander people to access
digital health information.
Authors: Karen McPhail-Bell; Nathan Appo; Alana Haymes; Chelsea Bond; Mark Brough; Bronwyn Fredericks Journal: Health Promot Int Date: 2018-10-01 Impact factor: 2.483
Authors: Marita Hefler; Vicki Kerrigan; Becky Freeman; Gordon Robert Boot; David P Thomas Journal: BMC Public Health Date: 2019-05-21 Impact factor: 3.295
Authors: Tan Yigitcanlar; Nayomi Kankanamge; Alexander Preston; Palvinderjit Singh Gill; Maqsood Rezayee; Mahsan Ostadnia; Bo Xia; Giuseppe Ioppolo Journal: Health Inf Sci Syst Date: 2020-10-15