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How should we share living guidelines with and for people with lived experience?

11 June, 2024

In this video, Dr Anneliese Synnot talks about the results of an ALEC survey of community members / people with lived experience about how we should share living guidelines with them.

Below, we provide a more detailed summary of the study and its results.

What are living guidelines?

Living guidelines are evidence-based statements that make recommendations to help health professionals and people with lived experience make decisions about their care. Researchers, with health professionals and people with lived experience, comb through the latest global evidence and use their findings to develop recommendations for different health topics. These recommendations are shared in an easily accessible, online format called ‘living guidelines’. They are ‘living’ because they are always being updated with new and relevant information.

About the study

Living guidelines are quite a new concept, and we know very little about how we should share them with people with lived experience. So, in this study, we invited people with lived experience who were familiar with clinical guidelines (or living guidelines) to complete a brief online survey. We asked questions about what living guidelines might mean for them, how we could make them easy to find and use, and potential challenges to their use by people with lived experience.

What we found

We heard from 45 people from 12 countries. Here’s what people told us…

Potential benefits of living guidelines for community members

They were enthusiastic about the concept of living guidelines and thought they would lead to community members receiving up to date, trustworthy information and care. They believed living guidelines would provide a source of truth amongst other misleading advice, and they could assist community members to make good health and care decisions with their health professionals.

“There are many conditions in which treatments and understanding are quickly evolving and guidelines should be catching up quicker.” 

 “I really like it. It is a commitment to continuous improvement and applying the best evidence available. I would be confident that myself or my family member was getting care based on the best evidence available.”

“I like the idea that they can assist me to advocate for myself and decisions that affect me.”

Potential challenges of living guidelines for community members

They also identified potential challenges related to living guideline dissemination, such as low public awareness of guidelines in general and confusion about updated recommendations. They also highlighted the importance of health professionals using and supporting living guidelines.

“My immediate thought was, what actually does it mean, the terminology?”

“It became really confusing for community members in particular to understand if they were looking at the most recent [version] and to identify what piece of information had been replaced, removed or updated.”

“Medical Colleges can support some guidelines and then contradict them on their own websites…the information has to be consistent”

“Barriers from health professionals not thinking living guidelines are relevant for patients to read or understand”

Practical strategies for sharing living guidelines with people with lived experience

They identified a range of practical strategies to support peoples’ awareness and use of, and access to, living guidelines. These included:

  • Partnering with people with lived experience to develop the living guideline and in how it is shared;
  • Raising awareness by promoting the guidelines widely through trusted health information sources and on social media; and
  • Using user-centred formatting and design principles (e.g. considering accessibility needs, and publishing summaries of the living guideline recommendations with plain and culturally-appropriate language).

“There needs to be involvement of patients from ground zero in all aspects of living guideline development – that’s the key point” 

“Every relevant health association should have them readily accessible on their website and health professionals should refer carers to them… Maybe they could be freely distributed by the relevant health professional.”

“…by easy-to-read, concise charts with lay vocabulary. You have to tackle low health literacy, and also disabilities and there are many ways and communication tools that can be used here.”

 What we’ll do next

ALEC guideline developers will use the study results to inform how they plan to share their living guidelines with people with lived experience. We will also conduct further research on this topic.

We are planning to publish the results of this study in a journal article, and will make the results available here.

For more information, please get in touch with us at [email protected]

 Study investigators

Dr Anneliese Synnot, Dr Samantha Chakraborty, Dr Danielle Berkovic, Dr Hui Zheng Chen, Dr Jessica Xue, Professor Tari Turner


Video developed by Shannon Barnes, ALEC Evidence Officer.