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Ethical Review of Quality Improvement Activities in Health Services submission

ID: 
29
This submission reflects the views of
Organisation Name: 
Northcott Disabilty Services
Please identify the best term to describe the Organisation: 
Non-government organisation
Personal Details
Specific Comments
Comments: 
Introduction

Northcott Disability Services believes that it is important this document reflects the needs of all groups impacted by the National Statement, including community based disability agencies.

The term used in sentence one of the introduction indicates that the QI guidelines relate to ‘health service delivery’. This term does not convey that the content of the document is applicable to the disability sector or other community based agencies. 

The introduction to the document provides a clear, brief outline of the document’s purpose and welcome guidance in an area that is often unclear.

The inclusion of examples of Quality Improvement activities within the introduction removes ambiguity and will be helpful for those determining ethics review requirements. The addition of an example more relevant for those working in the community (such as ‘client survey’) would also be helpful in broadening the document’s reach.

The term ‘patients’ is no longer used among disability service providers, ‘client’ or ‘service user’ may be a more appropriate descriptor of potential research/QI participants who are not in a hospital  or direct health care setting.

The introduction could be formatted so as to appear less dense- for example, perhaps a dot point list of common QI activities (Paragraph One)

Research merit and integrity, justice, beneficence and respect

The information included in discussion of consent in this section is valuable, however further reference to the statement would provide greater emphasis.

We would like to suggest the inclusion of a sentence acknowledging the importance of informed consent with reference to the statement for groups for whom particular consent issues require consideration (eg children 4.2, those who are highly dependent or have particular communication requirements 4.4, those who have cognitive impairment, intellectual disability or mental illness 4.5 It is important that such issues be recognised both to ensure that the ethical considerations surrounding vulnerable populations are not overlooked and to promote the inclusion of these groups in QI to foster quality service provision.

The other aspect of consent worthy of mention is the notion that consent can be withdrawn if a participant has a change of mind

Excerpts from the National Statement on Ethical Conduct in Human Research (2007)

This section provides clear guidance as to the relevant content of the National Statement.

Whilst it is essential that the Quality Improvement document provides reference to the National Statement the formatting of this section does not make it easy to read. It would be easier to follow the flow of information if the language were simplified and referencing provided after the information.

The placement of the numbering from the National Statement in bold at the start of each paragraph seems to break the flow of the document. If this information is required to be included as a direct quotation from the National Statement perhaps it would be more readable if  referencing was placed after the text.

Flowchart

The content is clear and will be helpful in practice.

If there is a way to simplify the presentation of the flow chart this may make the information easier to access, perhaps the addition of an arrow to indicate the ‘start’ of the flow chart.

General Comments
Comments: 

Northcott Disability Services supports 10,000 children and adults   with disabilities, their families and carers across New South Wales and the   Australian Capital Territory.  We have   500 staff across 25 sites and offices. We are involved in various Research   Projects, committed to service evaluation and outcome measurement ; all areas   of continued growth across the disability sector. The issue of ethics in   Research and Quality Improvement is one to which we have given much   consideration in recent years.

In June 2012, Northcott co-facilitated a Research Ethics Roundtable   event with the Australasian Society for Intellectual Disability(ASID) NSW.   This day was attended by 42 delegates, the majority CEOs and Research   Managers from disability agencies in NSW. It is clear that many across the   sector share our desire to promote consistency in ethical research practice   and a working party has been formed to further this aim.

Northcott welcomes the opportunity to comment on this draft document.   It will be a valuable guide to our practice. We believe that for the   disability sector to embrace the principles of the National Statement it is   vital for documents, such as the guidelines for QI, to be written in a manner   that reinforces the relevance of the Statement to disability agencies.

This can begin to be achieved with:

  •   the use of appropriate terminology within   documentation ,
  •   inclusion of relevant examples within   guidelines,
  •   documents written simply and formatted   clearly,
  •   continued liaison between the NHMRC and the   sector

Northcott would welcome the opportunity to be involved if further   consultation is required regarding this or future documentation.

 

Page reviewed: 17 June, 2013