Living Guideline Process

Part of the implementation of the New Zealand Autism Spectrum Disorder Guideline (2008) is the establishment of a process to keep it 'alive'. The idea behind this is simple: ensure that the recommendations within the guideline are always in line with the evidence as it changes over time. But how simple is the execution of the idea?

Running a living guideline process on a national guideline has only been attempted once, by the Scottish Intercollegiate Guidelines Network (SIGN). They set up and managed an annual process for maintaining their asthma guideline, a process which is ongoing.

SIGN have evaluated the process to date and described the following key 'learnings':

1. the importance of having excellent information management, as turnover in their living guideline group was an issue for them, and gaps in institutional knowledge created handover problems
   
2. determining the living guideline update programme involves a prioritisation exercise, which is never easy for people to do
   
3. because the group had people in it who were not part of the development of the original guideline, they had no ownership over it; they therefore felt free to question the relevance and appropriateness of the original clinical questions. It is the clinical questions that are the starting point for all updates
   
4. as with guideline development, it is important to time-limit the search for new literature on the topic to be updated, or else searching becomes continuous
   
5. it is important to determine at the outset how you are going to relate the updated evidence to the original guideline, especially if there is any difference in the methods used - the danger being that the updated section compromises the existing guideline. SIGN limited themselves to electronic outputs only; this was to reduce publishing costs and fast track the outputs. The number of updates that were both feasible and affordable was approved at the outset of the project (it was 3 over 3 years). However, they chose to make annual changes to the same electronic document using different colours to represent the changes from different years.  This resulted, over time, with multi-coloured sentences
   
6. it is important to have a comprehensive and effective plan for making users aware of the updates
   
7. it is important to have a strategy in place for ending an update for any particular topic area, and managing expectations around this strategy. At some point, the evidence may not be shifting enough to warrant the investment in updating
   
8. as with guideline development, the mana and personality of the sector Chair of the living guideline group is fundamental to the success of what was a complex project.

NZGG has taken into account these points as it designs and implements the process for the ASD guideline. This guideline provides its own unique challenges to a living guideline process, especially:

1. it is not a strictly clinical guideline; it covers the whole-of-life issues facing people with lived experience of ASD. The different sections of the guideline were developed using different methodologies, not all of which were systematic, and
   
2. there are over 200 recommendations, not all of which are specific in nature.

NZGG has agreed with the Ministries of Health and Education that the living guideline process will be systematic. We therefore expect to have to navigate carefully through SIGN learning (e) above, as our methodology will not always be consistent with the original methodology. However, we do hope that over time this will improve the robustness of the guideline in terms of its evidence base.

As noted by SIGN, this process involves prioritisation and containment of the scope. We are being clear that the living guideline process will only cover topics that are within the scope of the current guideline. This approach is not intended to invalidate the addition of other topics, but simply to say that another process (more akin to normal guideline development) is needed for that.

Budget and time constraints also mean that, as with SIGN, only 3 topics are likely to be updated over the next two years. NZGG has put in place a living guideline group which has met once and has started this process. As SIGN noted, it is not easy, however we have put in some parameters that are guiding the process. These include:

1. there must be a significant change in a recommendation (eg, addition, deletion, increasing specificity in wording). A change in grading is not significant enough
   
2. the significant change must be supported by evidence that has been published since April 2004. This is the cut-off date for the evidence underpinning the guideline. We are accepting the evidence and the appraisals of that evidence and not opening it up for review.

As we establish and run this process we will keep you up-to-date on the issues that we are grappling with and how we are resolving them.

Links to further Information on Living Guidelines

The cutting edge nature of living guidelines is evidenced by the links below. These focus on the logical models needed to make the updating of guidelines a more efficient process using information technology.

•  http://www.springerlink.com/content/l353n6740r146775/ 
•  http://linkinghub.elsevier.com/retrieve/pii/S0933365708001231