The Centre for Health Communication and Participation, including the Cochrane Consumers and Communication team, is busy with new protocols, reviews, primary research publications and resources.... making this latest newsletter chock-full of research goodness!
We've made a small change to our newsletter this edition. You may or may not know that Cochrane Consumers and Communication actually sits within the Centre for Health Communication and Participation (CHCP) at La Trobe University. As we've grown as a Centre we have connected with more and more people through our CHCP brand. To acknowledge that, we're now co-branding our newsletter, but will continue to share both our Cochrane and our primary research work, events and opportunities with you all. We hope you enjoy our (slightly) new newsletter look and feel!
Spring is sprung in Australia and our Cochrane publications are blooming! 2019 has seen an absolute explosion in publications from Cochrane Consumers and Communication, and we have even more reviews coming down the pipeline for publication late in the year. Well done to all our hard working author teams and editors!
New protocols
Since our last newsletter we've had three new Cochrane protocols published.
Dr Janet Jull and colleagues have published 'Decision coaching for people making healthcare decisions'. This review will examine the outcomes of healthcare providers giving non‐directive guidance and support, to help prepare patients who are making a range of health decisions.
In June, Dr Charlene Treanor and colleagues published an intervention review titled 'Psychosocial interventions for informal caregivers of people living with cancer'. The review found that psychological or social support interventions for people who care for someone with cancer may have small beneficial effects on quality of life for carers.
The Centre for Health Communication and Participation Year in Review 2018 is now available! In 2018 our Centre was driven by the themes of stakeholder engagement, ensuring our work is easy to find, and application of our research. As a result we had 15 peer reviewed journal articles published, presented at 11 conferences, developed 17 resources for Cochrane authors, had two PhD students graduate... and much more!
'One idea at a time' is a new regular section of our newsletter, where we share ideas or issues that have come up recently through our work. In this edition, Centre Head Sophie Hill shares her thoughts about the power and potential of consumer feedback.
What is the significance of learning from consumers? I readthis articleexamining the patient ratings of health services under supervision and it resonated with me. The authors (led by Dr Rudolf Bertijn Kool) concluded that organisations which review quality ‘might learn from these results’ as ‘they indicate that the inspectorate [the agency responsible for intensified supervision of underperforming hospitals in the Netherlands] identifies the same hospitals as “at risk” as the patients rate as underperformers’.
What does this signify?
For many of us, the views and feedback from consumers (patients, family members, consumer representatives) has weight, value and usefulness. It is valid information – not incidental. It can be used in many different ways to improve services and health outcomes.
The idea here is that consumer feedback is worth something.
Where does this idea take us?
First, it can take us back in time so that we can see how far we have come – from using consumer feedback as an optional or marginal add-on to a central plank of health policy and improvement.
Second, it is used here to stand in for something else. The article tells us that the rating data from patients was equal in value to the assessors using outcome data.
Third, is this an easy idea? No. As Dr Bronwen Merner showed in herresearch with carers, being responsible for speaking up about patient safety can be highly burdensome for carers – in situations where they are not believed or valued. In this context, it is good to learn of the new program being introduced by Safer Care Victoria, calledHEAR Me,which aims to empower patients and family members to escalate care directly if they believe something is wrong.
This is a great development but we can go further with this idea. There are many people whose views are trivialised or not listened to – whose feedback does not have worth or value. This is important to change because there is most likely a link between being a person who is not taken seriously and being someone who gets worse health outcomes.
How do you go from identifying a long list of important research topics to a smaller list that are essential to a broad community of interest?
That question is the focus of a new article by Anneliese Synnot, published in the journal Health Research Policy and Systems. The article is open access so you read it in full here.
Twenty-eight people - 14 consumers and 14 health professionals/decision-makers – helped the Cochrane Consumers and Communication Group at a one-day workshop prioritise new topics for Cochrane reviews of interventions for communication or participation in health. The priority setting will lead to a new focus on reviews in the areas of improving end-of-life care communication, patient/family involvement in patient safety, improving future doctors’ communication skills, consumer engagement strategies, and promoting patient-centred care. Our recently published patient-centred care protocols fromMernerand Loweare a result of this priority setting work.
With the exponential growth of articles in clinical literature, search result numbers are on the rise. This increases burden on review authors before they even start analysing their data or writing their reviews.
In response, Cochrane Information Specialists have developed ways to reduce the numbers of references for authors by using evidence filters as part of the search. They are also able now to cut the numbers significantly by using machine learning algorithms to retrieve references that are more specific to the review topic criteria. This algorithms have proven particularly useful in identifying Randomized Controlled Trials.
Anne Parkhill, our group’s Information Specialist, recently presented on this topic to the Australian Health Librarians' Professional Development Day.Anne’s presentation reviewed open access classifying tools that are readily available for health librarians to use, and introduced the ways they have been used and tested for our Cochrane Group. Her short presentation prompted a number of questions and the conference Twitter feed indicted that a number of the participants on the day experimented later with the classifying tool(RobotReviewer).
Further information on the classifying tool that Anne discussed is here.
Implementation of Cochrane methods in complex reviews
Every healthcare encounter involves communication and effective health communication is central to the delivery of safe, high-quality healthcare, while poor communication is a risk to patient safety. There is growing demand from policy-makers and other decision-makers for evidence about best practice in healthcare communication.
Systematic reviews of such interventions are fundamental to building this evidence base, but such interventions and reviews are often highly complex and pose considerable challenges for authors and editors. In their paper titled'Supporting implementation of Cochrane methods in complex communication reviews: resources developed and lessons learned for editorial practice and policy' Cochrane editors Rebecca Ryan and Sophie Hill share their experiences of supporting authors to navigate systematic review methods for complex communication reviews, and some of the solutions they have found for common methodological problems.
“I’m trying to stop things before they happen”: carers’ contributions to patient safety in hospitals
Drawn from Bronwen Merner’s PhD research, this article explores how family carers contributed to the patient safety of their relatives in Australian hospital settings. Thirty-two individual, in-depth interviews were conducted with carers from Victoria, ACT and NSW about their experiences protecting the patient from harm during hospitalisation. The study showed carers engaged in a wide range of safety actions at a variety of intensity levels (from low to high). Carers who engaged in high intensity patient safety actions provided the patient with greater protection, but typically experienced negative consequences for themselves.
Louisa Walsh and Sophie Hill, along with a team of authors from all over Australia, have published an update of their 2016/17 studies into the health literacy demands of Australia's personally controlled electronic health record, My Health Record. 'Assessing the information quality and usability of My Health Record within a health literacy framework: What’s changed since 2016?'found that although there had been some improvements around the accessibility of information about My Health Record, particularly for people with difficulties understanding written English, My Health Record still caters poorly to people with, or at risk of, low health literacy. You can read the original 2016/17 papershereand here.
In partnership with Safer Care Victoria, the Centre for Health Communication and Participation has recently published theGuide to Producing and Sourcing Quality Health Information.The Guide provides practical advice, links to high quality resources, and self assessment tools to help Victorian health services raise the quality of the health information they provide to patients, carers and users within their service.
On the 19th June 2019 the Voluntary Assisted Dying Act 2017 came into effect in Victoria, Australia. Victorians who are at the end of life and who meet strict eligibility criteria can now request access to voluntary assisted dying. You can read about voluntary assisted dying in Victoria here.
The Centre for Health Communication and Participation was responsible for the development of the community and consumer information about voluntary assisted dying, wokring alongside a working party of health professionals, consumers and carers chaired by Mary Draper AM. 'Voluntary assisted dying - Information for people considering voluntary assisted dying' was developed using a co-production method involving a range of stakeholders, including consumers, carers, community organisations, clinicians and policy makers.
In 2019 Safer Care Victoria (SCV) launched thePartnering in Health Care Frameworkto support Victorian health services strengthen how they approach patient-centred care and continue to empower patients, carers and family members to participate in health care. One important factor in a health care partnership is carers and patients knowing they will be heard if they have a concern about the medical status and care for themselves or a loved one.
The Centre for Health Communication and Participation staff member Nami Nelson led arapid review of evidence and experiences of patient, carer or family member-initiated escalation processes and systems. The rapid review included research on consumer-initiated escalation and how these findings link to experiences of consumer participation in care. It also included a review of existing consumer-initiated escalation services in Australia to identify learning and experiences that can inform best practice recommendations for Victoria. Interviews with stakeholders were used to explore common themes that emerged from the evidence, and an advisory committee reviewed the report and its recommendations.
The rapid review was funded by SCV. The review findings informed SCV's plans to pilot both a central support phone number and a principles-based framework to guide consumer-initiated escalation in Victoria.
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