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The latest news on consumer engagement in research, healthcare and system designvoice

Discussions and resources about consumer engagement in research, clinical decision-making and health service/system design and delivery were shared during a recent action-packed week of tweeting for @WePublicHealth.

Researchers from the Centre for Health Communication and Participation (CHCP) at La Trobe University highlighted that engaging consumers in all aspects of health is vital to creating health information, services and systems that are patient-centred and meet the needs of patients, carers and families.

However, research shows that there is no ‘one size fits all’ approach to consumer engagement, and engagement strategies need to be tailored towards the people who use the services. This is especially important when designing services to meet the needs of people who are often marginalised by current health systems and services.

Our thanks to Louisa Walsh and colleagues for their contributions to @WePublicHealth during the week of 2 August, summarised below.

Also, follow this Twitter list to stay in touch with those contributing to the #CHCPConsEng discussions.


Tweets by the Centre for Health Communication and Participation

The Centre for Health Communication and Participation (CHCP) is in the School of Psychology and Public Health at La Trobe University. We also house the Cochrane Collaboration Centre: Cochrane Consumers and Communication. @CochraneCCRG

Through our Cochrane work we also produce systematic and rapid reviews of the research evidence around how people interact with and experience health care (‘communication and participation’).

Our tweeting provides a timely focus on engaging consumers in creating health information, services and systems that are patient-centred and meet the needs of patients, carers and families.

To kick off conversation, it’s an often discussed question…which terms do you prefer to describe people who use health services, and why?

We know it’s long been a contested term, both in Australia and overseas, and not all people or organisations like or use it:

‘Patient, consumer, client, or customer: what do people want to be called?’

‘Patient, client, consumer, survivor or other alternatives? A scoping review of preferred terms for labelling individuals who access healthcare across settings’.

Communication matters

In 2019 our Centre developed a ‘Guide for Producing and Sourcing Health Information’. The Guide helps health services develop, or find and adapt, health information which meets best practice principles.

The Guide provides guidelines for health information across four domains:

  1. Governance
  2. Partnering with consumers
  3. Supporting health literacy
  4. Sharing resources.

It also includes toolkits to help map health information activities to the @ACSQHC Standards.

As many of us sit in lockdown today, we know that there have been many problems with health communication during this pandemic. But can you share an example of high quality COVID-19 health communication or information you’ve seen?

An important piece of work for @CochraneCCRG in 2020 was a review for the World Health Organization into communicating physical distancing measures for COVID-19. Full report.

Findings also emphasised the importance of building and maintaining public trust in authorities and of engaging communities when planning and delivering messages related to physical distancing measures.

Work is currently underway to update the COVID-19 review, integrating more research findings from the current pandemic.

Recommended resources

Here are a few great articles and resources to give some background on Shared Decision Making (SDM) and decision aids.

One of the most cited reviews in the whole @CochraneLibrary is this review of Decision Aids, led by @d_stacey, and published by @CochraneCCRG: ‘Decision aids to help people who are facing health treatment or screening decisions’.

Prof Stacey’s review found that “when people use decision aids, they improve their knowledge of the options and feel better informed and clearer about what matters most to them”.

But what exactly is a decision aid? Find out in this blog from @WanderingNami and @d_stacey : What is a ‘decision aid’?

To find some examples of decision aids, check out:

Having good decision aids on vaccines, particularly now, is incredibly important. Shout out to @LyndalTrevena for this decision aid on AstraZeneca vaccine.

“Shared decision making improves patient experience patient experience. It also makes patients feel like they are part of the team, more comfortable with the option, more realistic expectations, and more committed to the chosen option.” Prof @d_stacey

“Shared decision making also has the potential to lower costs when patients learn about other, non-invasive, options for their health condition.” Prof @d_stacey

Check out our Shared Decision Making in Healthcare project led by @WanderingNami which includes tools, resources and a community of practice.

We also have some #SDM training coming up for clinicians: https://latrobe.edu.au/courses/short-courses/person-centred-care-through-shared-decision-making

We have a blog post all about SDM and decision aids for CALD communities here.

See the Decision Support Tools on contraceptive methods

Promoting safety

How do patients and family members contribute to safety in hospitals? Two of our recent projects demonstrate how patients and families are essential partners in hospital safety.

Family members help to prevent medical mistakes in hospitals. But they have to fight hard to get results, as this study from @bronmerner shows: “I’m Trying to Stop Things Before They Happen”: Carers’ Contributions to Patient Safety in Hospitals.

Through her research, @BronMerner demonstrated that family members who were very active in contributing to the safety of their loved one in hospital risked negative consequences themselves, such as feeling responsible for the safety of the person, or facing hostility from staff.

Our Centre has also conducted a related project, a rapid review of systems and outcomes of patient- or family-initiated escalation of care.

Examples of consumer-initiated escalation of care processes include REACH in NSW and Ryan’s Rule in QLD.

In December 2020, @CochraneCCRG also published a review of the international literature into the effectiveness of escalation of care, led by @nicolamackintos.

How do patients and families make your hospitals or health services safer? What can be done to support the vital roles that patients, carers, and families play in making hospitals safer for everyone?


Social media

The final project around consumer engagement in healthcare we’re presenting today is from PhD student @laqwalsh. She’s examining the use of social media as tool for consumer engagement in health service design and Quality Improvement.

She’s publishing as she goes, and you can access all her outputs so far here.

Her first academic paper was a scoping review of international literature published in @DigitalHealthJ, and presented a range of different ways social media can be used for consumer engagement.

She also wrote about her project for @CroakeyNews earlier this year.

And she’s currently finalising a ‘how to’ guide from the findings of her research for hospitals, service providers and consumers wanting to use social media as part of engaging consumers in service design and QI activities.

Priority setting

The outcomes and experiences of involving consumers and other stakeholders in the priority setting project and Cochrane reviews is also the focus of @anneliesejs‘s PhD.

Being transparent and sharing our methods and what we learnt so others apply and improve upon them is important to our Centre. You can read the full priority setting project report here.

And there is a shorter summary of the priority setting process here.

@anneliesejs has also shared details about the priority setting process she undertook, and many of the tools and resources she used, on the project website.

@anneliesejs is also publishing academic articles about her PhD work. Her most recent article evaluates the priority setting project and gives recommendations for future research engaging consumers and other stakeholders in priority setting.

Have you involved consumers in setting priorities around research, or been a consumer in a priority setting project? What wisdom can you share with researchers who are new to priority setting?

A big, ongoing, project for our Centre is our priority setting project, in which consumers, clinicians, policy makers and other research end-users determined the topics for Cochrane reviews.

Living clinical guidelines

What are living clinical guidelines? Clinical guidelines give evidence-based recommendations to health professionals on care for people with a condition. Living guidelines are continuously updated, as opposed to 3-5 year updates of traditional clinical guidelines.

You can learn more about living evidence, including living clinical guidelines, here.

One of our Centre’s current projects examining consumer engagement in health has been working with @BurnetInstitute to understand the experience and impacts of #COVID19 on consumers, hospitals and health systems.

The Optimise Study has examined how #COVID19 has impacted on Victorians’ income and finances. You can read the full report, which including insights from the community engagement group, here.

Optimise also looked at how shame and stigma affect COVID0-19 testing in Vic. Read the insights of community members in this report.

Our two Cochrane reviews in the area of provider/consumer partnership examine whether joint provider/consumer committees improve person-centred care, and what good practice looks like.

Article screening was one of the ways stakeholders were involved in this review.

You can also watch this video from lead author @BronMerner about the stakeholder involvement in the screening process.

Other recent examples of living clinical guidelines involving consumers in the development process include:

Stroke guidelines from @strokefdn

And the #COVID19 Living Guidelines from the National Covid-19 Clinical Evidence Taskforce

COVID-END is a repository housing evidence to support decision making during the pandemic – drawing together a range of resources for decision makers and researchers. It also houses a living knowledge hub. https://mcmasterforum.org/networks/covid-end

Recently, our Centre has also evaluated how researchers can work better with consumers to develop living clinical practice guidelines for diabetes.

Two patient centred care reviews will be published later this year, led by @BronMerner and  @mylowedown

You can read the protocols here.

And finally, the review into communication about end-of-life care should be published this year as well. You can read that protocol here.

The article is here.

Wrapping up, we’re going to be sharing some of our Centre’s recent research into health communication and health information.

Contributors have shared the importance of engaging a diverse range of people in research, and the difficulties achieving authentic – rather than tokenistic – engagement, in which consumers could truly influence decision making in research projects.

We – and others – also shared some great resources for researchers, and patients, families and community members involved as research partners.

Wrapping up

We’re going to finish off today linking to some useful articles, resources and groups around patient, carer and community involvement in research.

@MonashPartners have a lot of great resources and some self-learning modules around consumer and community involvement in research on their website.

The @PacerNetwork (Patient-Centred Research Network) from NSW has a lot of information, resources and webinar recordings around engaging patients and families in research: http://pacernetwork.org.au

We’re coming to the end of our week of tweeting for @WePublicHealth. It’s been a hard week for many people, but can we share some innovative and engaging (and maybe even fun?) health information we’ve come across?

Here’s a little min-collection of recent #COVID19Vaccination health information campaigns.

First up, the #GoodbyeCOVID campaign from @NWMelbPHN which has videos and resources promoting vaccination in 20 languages.

https://nwmphn.org.au/for-community/campaigns/goodbye-covid/

Next, a former @CochraneCCRG researcher, @JessicaJKaufman, shares her research in cartoon-ifed form in this @ABCaustralia piece on how to talk to people feeling unsure about COVID vaccination.

And who could forget ‘Ka Kite, COVID’ from NZ and ‘Steady Pom Pi Pi’ from Singapore.

More great follows are the Australian health consumer orgs. We shouted out some yesterday, but here are the national and state bodies on Twitter:

@CHFofAustralia

@HCNSW

@HealthCanberra

@HCQconsumerorg

@HealthIssuesCtr

@hconcwa

Also follow this Twitter list of health consumer engagement tweeps.


See Croakey’s archive of stories about consumer health matters.

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