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Draft Statement on Consumer Involvement in Health and Medical Research submission

ID: 
10
This submission reflects the views of
Please add further information: 
Consumer representative and advocate in perinatal health (>10 years) and researcher in health information management and epidemiology
Personal Details
First Name: 
Natasha
Last Name: 
Donnolley
Questions
Q1. The aim of revising the Statement is to improve language and accessibility. Are there further improvements that should be considered?: 

The revised statement is far more concise and accessible for consumers to utilise. While the document flows more logically and smoothly it could be improved by including some of the additional examples and reference material that were in the first version. For example, the NINE PRINCIPLES OF SUSTAINABLE PARTNERSHIP was a useful resource for helping to facilitate partnerships and to help both sides of the partnership to understand what was required. "Partnership" is used frequently in the Statement but not everyone has a clear understanding of what that entails or how to make it work. If not included in the body of the Statement then perhaps an additional Appendix with some of these useful resources or concepts that help "operationalise" the Statement (to avoid having to always go to additional documents such as the Framework or Toolkit).

Q2. The draft revised Statement contains five definitions: Community, Consumer, Consumer Representative, Involvement and Stakeholders (refer page 4). Are the definitions satisfactory? Are additional definitions required? : 

In the area of maternity care, the use of the term "patient" is discouraged as pregnancy is not considered an illness. Unless a woman is admitted for medical or surgical intervention she is not a patient when she is pregnant or giving birth. Women receive their maternity care through a "wellness" model rather than an acute care model. As such, they are referred to as women or mothers rather than patients. The definition of "consumer" may need to also account for this. For example the addition of "those who utilise healthcare services".

The definition for "Involvement" seems to focus on the decision-making aspects of the research partnership and does not include the active participation in research. It does not incorporate the intent of the Statement to broaden the involvement of consumers past the passive "consultation" role. If the definition were to be taken in isolation of the Statement I would interpret it to mean that consumers were in partnership with researchers to influence decisions and perhaps framework around research (policies etc) but external to the actual conducting of the research activity itself.

It may seem obvious to most people but it would be beneficial to define what is meant by "Research". There are many activities within the healthcare system that may be deemed by some as research that are actually QA activities. I think it would help to try to define what is meant by research to identify the scope of this Statement. Another example is that there is an increasing amount of data being collected in the healthcare sector that can be used for epidemiological research, yet this is an area that consumers are often forgotten or researchers do not see how they fit. Research is more than clinical trials yet that is often where the focus on consumer involvement can be.

Q3. The draft revised Statement outlines the Key Elements that underpin effective involvement and Levels of Involvement (refer page 5). You are invited to comment on the identified Key Elements and Levels of Involvement.: 

The Levels of Involvement section could be strengthened by detailing the whole spectrum of involvement rather than referring the reader to the Appendix for examples and just mentioning the two extremes of the spectrum of involvement in the text. Each of the resources in the appendix have a similar scale of involvement and these could easily be adapted into a single image or arrow showing the least involvement or passive contribution of consumers through to consumer-led research but explaining what lies in between. Many people don't go to the effort of looking up the links in Appendices and it is the explanation of the different levels of involvement that will assist research organisations and individual researchers to identify how consumers could be involved in different types of research activities. This is an area often the least understood and is a barrier to increasing the level of participation of consumers in research. It doesn't have to be an all or nothing approach and different levels of involvement will suit different projects. It is important that this is articulated more broadly in this section by example or by a graphic.

I have created a graphic that shows this "continuum" of involvement that I adapted from a number of resources:

 1Adapted from Hanley B, Bradburn J, Barnes M, Evans C, Goodare H, Kelson M, et al.(2004) Involving the public in NHS, public health and social care research: briefing notes for researchers. INVOLVE  and Brager & Specht (1973) In Consumer Focus Collaboration (2000) Improving Health Services through Consumer Participation: A Resource Guide for Organisations

 

Q4. The draft revised Statement includes information about how the Statement should be put into practice (refer page 5). You are invited to comment on this section, including whether additional information should be added. : 

This is a very useful section and splitting it into different sections for research institutions, researchers and consumers/community is excellent. It highlights that there is a responsibility for making this work at all levels and provides very practical suggestions for how this can happen.

The old Statement included a section on overcoming the risk of bias when partnering with consumers in research. This is a very important issue, particularly if consumer organisations are also contributing funds to the project. It would be helpful to see this addressed in the new Statement if possible.

No further suggestions for things to add but would like to make a comment that many of the actions are challenging to implement, particularly without funding and equal buy-in from all parties.

Q5. NHMRC is considering placing Appendix 4: Useful Resources on our website so that stakeholders can access examples of consumer and community involvement in health and medical research. Please tell us about exemplars that should be included.: 

I would highly recommend you speak with Miracle Babies as an example of a consumer organisation that is working closely in partnership with neonatal researchers at a number of Australian hospitals. Another example is the Australasian Maternity Outcomes Surveillance System (AMOSS) that has conducted (and is still conducting) a number of studies that have been developed and conducted in close partnership with different consumer organisations, including the International Vasa Previa Foundation and the National Breast Cancer Foundation. www.amoss.com.au

 

Page reviewed: 5 January, 2015