This blog is totally independent, unpaid and has only three major objectives.
The first is to inform readers of news and happenings in the e-Health domain, both here in Australia and world-wide.
The second is to provide commentary on e-Health in Australia and to foster improvement where I can.
The third is to encourage discussion of the matters raised in the blog so hopefully readers can get a balanced view of what is really happening and what successes are being achieved.
Quote Of The Year
Timeless Quotes - Sadly The Late Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"
or
H. L. Mencken - "For every complex problem there is an answer that is clear, simple, and wrong."
Communities affected by blood-borne viruses
and STIs are more likely to opt out of digital health services, says a new
national study.
People who have experienced stigma and
discrimination in health care settings are more likely to distrust digital
health services, a new UNSW study says.
The report, from UNSW’s Centre for Social Research in Health (CSRH), surveyed more than 2000 people
across Australia from April – June 2020, including 600 people classified as
members of one or more populations affected by BBVs and STIs.
People
with HIV, trans and gender diverse people, sex workers, and gay and bisexual
men reported the lowest levels of trust in digital health care services, such
as My Health Record, and the most frequent experiences of stigma.
While
these groups reported better knowledge of My Health Record than the general
population, they were much more likely to report opting out.
“These
communities are highly engaged, well informed and notably reluctant to put
their trust in some aspects of digital health,” says Associate Professor Christy Newman, one of the lead
investigators from CSRH.
“This
suggests that an understanding of the potential benefits of digital systems
like My Health Record did not overcome the doubts that these communities considered
when opting out.
“More
meaningful consultation with affected communities and the peer-based
organisations that have their trust is required to ensure that communities
affected by stigma and discrimination are not left behind when it comes to digital
health.”
Criminalisation of stigmatised practices damaged trust
Those
participants who expressed distrust in digital health also reported having
fears relating to the criminalisation of some behaviours related to HIV, sex work
and drug use.
These
groups reported concerns that personal data and health information related to
stigmatised identities or practices could be shared without their consent,
placing them at risk.
“I don’t
have faith in the federal government creating IT infrastructure with the necessary
privacy constraints or kinks worked out just yet,” one survey respondent
said.
“If
there was some type of alert that I could set up that could allow me to consent
or withdraw consent for my data being used for something I’d be fine with that
but not people just using my data without my knowledge,” another respondent
said.
‘These
communities are highly engaged, well informed and notably reluctant to put
their trust in some aspects of digital health.’
James
MacGibbon, a chief investigator of the project from CSRH, says: “These
communities typically fear that their personal information is more easily shared
through digital means without the consent of the affected person, with a range
of potential social, legal and economic consequences.
“They
do not opt out of digital health initiatives because they don’t understand the
promise offered by more integrated and effective data management systems. Nor
because they do not have need of these improvements.
“They
opt out because they are not convinced the potential benefits outweigh the risk
to their personal privacy and security, at least in the form in which they have
been designed and promoted.”
Stigmatised groups more likely to access digital health care during
COVID-19
Affected
groups were also least likely to share personal information with health
authorities during the pandemic, but more likely to have made use of digital
services to access essential health care.
Affected
populations reported higher recent use of online consultations and online
pharmacies than the general population respondents. They were also more likely
to report stockpiling essential medications and organising online health consultations
in the early weeks of the COVID-19 pandemic.
There
were particular fears reported regarding the impacts of the COVID-safe app and
contact tracing on communities at risk of criminalisation and discrimination.
“I
understand the public health importance of this kind of tracing but I think for
historically targeted communities it makes sense to opt out,” one survey
respondent said. “As a migrant sex worker, I wouldn’t risk it, no matter how
well they think they’re doing with digital security.”
“I
simply don’t disclose that I am a sex worker, or trans, or queer/asexual unless
it absolutely needed because I have had horrific experiences when doing so
previously,” another survey respondent said.
“Queer
health in many aspects is incredibly moralised and pathologised in contemporary
Australia – I don't want my data to be collected by any centralised
database for whatever use.”
Community groups express concern over consequences of digital health
Key
informants working in advocacy, policy, health promotion and research with
expertise in helping communities affected by BBVs/STIs, stigma and
marginalisation were also interviewed between March – June 2020.
“While
they acknowledged the promise of digital health, these experts were also
concerned about the consequences for communities affected by BBVs/STIs in
engaging with these systems,” A/Prof. Newman says.
“Rather
than viewing this as issues with digital literacy, we can see through our
research that it is the relational and structural factors that underpin institutional
trust in health care that drive distrust in digital services.”
In
tandem with extensive government investment to expand digital health, more
effort should be given to addressing the social, cultural, and political issues
that continue to marginalise some communities from participating in digital
health systems, the study found.
‘an
understanding of the potential benefits of digital systems like My Health
Record did not overcome the doubts that these communities considered when
opting out.’
“To
address these concerns, we recommend finding new and more effective ways to
ensure that consent is secured to collect, store and share health data, and
that consent is specific, dynamic, and informed,” A/Prof. Newman says.
“More
resources should be directed towards remediating the legal and policy
conditions that continue to discourage some communities from participating in
digital health, and in supporting meaningful consultation with peer-based
organisations who have the trust of communities affected by BBVs and STIs.”
Despite
extensive government investment to expand digital health, minimal research has
been conducted on community views of these systems in Australia. In particular,
there has been scant attention to the perspectives on digital health of
populations affected by blood-borne viruses (BBVs) and sexually transmissible
infections (STIs) has received little attention.
The Trust in
Digital Health study was conducted by the Centre for Social Research in Health
in partnership with community organisations representing four of the priority
populations in the current national BBV/STI strategies: people with HIV, trans
and gender diverse people, sex workers, and gay and bisexual men.
Our methods
included a national, online cross-sectional survey (April–June 2020) of the
general population, including specific recruitment targets for the four
priority populations. We also conducted semi-structured interviews with key
informants (March–June 2020) with expertise in communities affected by
BBVs/STIs, stigma and marginalisation.
The survey sample included 2,240 eligible
participants, including 600 (26.8%) classified as members of one or more
priority populations. Overall, priority populations reported the lowest levels
of trust in digital technologies and in some health care services, and the most
frequent experiences of stigma.
Priority
populations were more likely to understand the potential benefits of My Health
Record, but also to have opted out of having one. These groups were also more
likely to have made use of digital services to access essential health care and
medications during the COVID-19 response, and the least likely to be willing to
share personal information with health authorities.
Key
informants were keenly aware of the promise and benefits of digital health, but
also concerned about the risks and consequences of communities affected by
BBVs/STIs engaging with these systems. Specific issues related to different
populations, but there was a shared focus on the harmful impacts of
experiencing stigma and discrimination in health settings. Key informants also
consistently reported that these communities typically fear that their personal
information is more easily shared through digital means without the consent of
the affected person, with a range of potential social, legal and economic
consequences.
A range of mechanisms and conditions for
building trust in digital health were also discussed, including the need for
significant reforms in system design, in community consultation processes, and
in the policy and legal contexts that shape the everyday lives, rights and
wellbeing of these communities.
The variety
of evidence we collected suggests that trust in digital health is influenced
less by technical design or digital literacy, and more by the relational and
structural factors which underpin trust in the institutions responsible for
health system design and regulation.
To address
these concerns, we recommend finding new and more effective ways to ensure that
consent is secured to collect, store and share health data, and that consent is
specific, dynamic, and informed. Major investments in discrimination reduction
strategies at every level of the health care system are also necessary to
ensure that health care is accessible, competent, and safe. Resources should be
directed towards remediating the legal and policy conditions that continue to
discourage some communities from participating in digital health, and in
supporting meaningful consultation with peer-based organisations who have the
trust of communities affected by BBVs and STIs.
-----
The direct
link to the .pdf is at the end of the release.
The full
report is an absolutely invaluable treasure trove of information on attitudes
to Digital Health and especially the MyHealthRecord. It is a must read and well done to all involved!
The key finding
that groups who are at risk of stigmatisation are likely to avoid the MyHealthRecord
(and other Digital Health) is not unexpected – indeed it was a risk I identified (along with many others)
ages ago. It is also really fascinating that these groups both knew more about
the #myHR and we also keen to avoid it generally.
It is worth
noting that stigma can attach to a much broader group of people including those
with many chronic diseases and visual signs of disease. Of course you need to
also mention racial and ethnic stigmatisation.
The essential
lack of trust of many in Digital Health is a subject of massive denial by the
ADHA etc. The design of the #myHR is one that does not provide community confidence
and is flawed as an initiative as is well known to those who read here.
I wonder will
this damning report stimulate any action or just ongoing denial that there is a
problem?
Note: Each
link is followed by a title and few paragraphs. For the full article click on
the link above title of the article. Note also that full access to some links
may require site registration or subscription payment.
Guy’s and St Thomas’ chooses Epic as ‘preferred supplier’ for £175m EHR
One of the
biggest NHS trusts in London has selected Epic as its ‘preferred supplier’ for
a new electronic health record (EHR) in a deal worth £175million.
Hanna Crouch –
9 October, 2020
Guy’s and St
Thomas’ NHS Foundation Trust issued a tender in May 2019
which included a requirement for GPs to have direct access to the EHR, as well
as having the option of linking up to King’s College Hospital NHS Foundation
Trust and possibly Royal Brompton and Harefield NHS Foundation Trust.
A
spokesperson for the trust confirmed that Epic was its “preferred supplier”.
“Following a
competitive procurement process, we have selected Epic as the preferred
supplier for our new electronic health record system and are in the process of
finalising contracts following approval of the full business case,” they said.
October 14,
2020 - Predictive analytics models that evaluate genetic and experimental
data could more accurately forecast which flu strains will be most prevalent
during the next winter, according to a study
published in eLife.
The models
have the potential to make flu vaccines more accurate and protective, resulting
in fewer illnesses and deaths.
Seasonal flu
infects between five and 15 percent of the world’s population each year,
causing between a quarter of a million and half a million deaths, researchers
stated. While vaccination is the best protection against seasonal flu, the flu
virus changes its molecular appearance each year, meaning the virus is able to
get past the immune defenses learned from the year before.
Every
year, the vaccine needs updating. But it takes almost a year to design a new
flu vaccine, researchers have to be able to predict what flu viruses will look
like in the future. The current prediction approach relies on experiments that
assess the molecular appearance of flu viruses, particularly at a key molecule
that coats the virus called haemagglutinin.
RWJBarnabas launching 'universal' social determinants of health screening
Social
determinants of health screening will be phased in across each of RWJBarnabas
Health's facilities by the end of 2021. (RWJBarnabas)
Every
single patient that heads to a RWJBarnabas Health facility will
be soon be screened for social determinants of health and, if needed,
referred to services for ongoing support, officials announced Tuesday.
SDOHs
are social or environmental factors in a patient's life—such as
their access to healthy food, safe housing or transportation—that can
ultimately impact their health.
Officials
from the New Jersey-based health system say the program, called Health
Beyond the Hospital (HBTH), will be the first "end-to-end,
universally applied, culturally-tailored and fully integrated" SDOH program
in the country.
With
Covid-19 cases surging in parts of the U.S. at the start of flu season,
developers of artificial intelligence tools are about to face their biggest
test of the pandemic: Can they help doctors differentiate between the two
respiratory illnesses, and accurately predict which patients will become
severely ill?
Numerous
AI models are promising to do exactly that by sifting data on symptoms and
analyzing chest X-rays and CT scans. For now, the increased availability of
coronavirus testing means AI is unlikely to be relied upon for frontline
detection and diagnosis. But it will become increasingly important for figuring
out how aggressively to treat patients and which ones are likely to need
intensive care beds, ventilators, and other equipment that could become scarce
if there’s a Covid-flu “twindemic.”
“That’s
on the forefront of everyone’s mind right now,” said Anna Yaffee, an emergency
medicine physician at Emory University who helped build an online symptom checker
to assess Covid-19 patients. “Although both viruses are similarly managed, they
are not the same entity, and patients will need different things.”
