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Draft Statement on Consumer Involvement in Health and Medical Research submission

ID: 
8
This submission reflects the views of
Organisation Name: 
Family Planning NSW
Please identify the best term to describe the Organisation: 
Non-government organisation
Personal Details
Questions
Q1. The aim of revising the Statement is to improve language and accessibility. Are there further improvements that should be considered?: 

We commend the NHMRC for seeking feedback on the draft statement for consumer involvement in health and medical research. While we believe the statement goes some way to establishing an acceptable position on consumer engagement in health and medical research, it fails to establish the importance of creating a sector that is responsive to the input and needs of  consumers. The statement and indeed the actions proposed appear to be driven by what is required by the sector rather than what is required by consumers.

As has been identified by the Australian Commission and Quality in Health Care (ACSQHA), consumers must be involved in an organisation’s governance, risk management, strategic planning, workplace safety, and evaluation and performance measurement. These areas have been largely omitted in the statement. We would expect for instance that medical research institutes would involve consumers in all stages of strategic planning and that consumers feed into the decision making of research boards. Policies, protocols and procedures must also have consumer input and the design and evaluation of projects must be done in conjunction with consumers. We strongly recommend the NHMRC statement adopt the actions as identified by ACSQHA- core standard 2 (partnering with consumers).

While researchers know the sector intimately, most consumers are not familiar with how the health and medical research sector operates. Therefore key to improving accessibility and enabling consumers to contribute in a meaningful way to decision making is the provision of training, education, support and information for both consumers and researchers.

In making the consumer participation statement accessible, thought should also be given to how people with disability and people from CALD communities access the statement. There is no mention in the document of the importance of reaching marginalised populations and the diversity of consumers that should be engaged.    

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? : 

The definitions are satisfactory. 

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.: 

Medical research institutes and research projects must include consumer engagement as a core requirement. It’s accepted the level of engagement and involvement will vary however there should not be a clause in the statement that gives the sector the ability to “opt out” of a consumer focus.

The statement should be stronger on the role of consumers in all areas of research including governance. There is no mention within the statement on the role of the consumer in managing risk, setting strategy and guiding the operational performance of an organisation or project.

The statement appears to be focussed more on consultation than on meaningful consumer engagement.

We also believe that the different stakeholders in the research sector should be identified, for example funding bodies (such as NHMRC, ARC, CRC Committee), research institutes and universities, and research projects. Consumer engagement in stakeholder environment varies but it’s important there is consideration in all facets of the sector and the statement identified the different levels

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. : 

As it stands the dot points are vague and the language passive and we make the following comments.

  • start planning and implementing involvement as early as possible

    Effective consumer engagement requires early involvement of consumers in the planning stages. There is also no clarity around what should be “planned” and “implemented”

  • consumer and community involvement must add value to the research

    “Must add value” is a subjective judgement and appears to put the onus on the consumer if “value” is not achieved.

  • reach out to an appropriately diverse range of consumers and community members to ensure the most effective involvement strategies are developed and implemented

    This should also include ‘hard-to-reach and marginalised populations’. This is particularly important given the major health challenges of vulnerable and disadvantaged people

  • be inclusive – the more inclusive the processes are the more consumers and community members will be able to participate

    This should be a given in any consumer engagement framework and is not required

  • treat everyone – consumers, community members, researchers and other stakeholders with courtesy, respect and integrity

    This should be a given in any workplace and is not required

  • work in partnership to develop the appropriate involvement activities

    Consumers should be involved in determining the levels of engagement and involvement in strategies.  

 

We would expect that key documentation related to the NHMRC such as the National Ethics Application Form would be revised to incorporate “consumer and community involvement in research”. There is also an opportunity to imbed consumer engagement in the NHMRC National Statement on Ethical Conduct of Human Research and in particular the composition of Human Research Ethics Committees (HREC)

While it’s acknowledged consumer and community engagement in some research projects could be difficult, research institutes (involved in NHMRC grants) should be required by the NHMRC to develop and implement consumer engagement frameworks.

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.: 

The website and document links should be checked, because some do not work. The link should be to the community and consumer involvement document and not to the organisation home page.

Our consumer engagement framework can be found here http://www.fpnsw.org.au/consumerengagementframework_1.pdf

Other useful links:

http://www.health.qld.gov.au/hcq/publications/consumer-engagement.pdf

http://www.phcris.org.au/guides/consumer_participation.php?promoid=698&stk=aho&id=3865&eid=5785#.U8YFgXUISM.mailto  

Other comments

Unlike the previous statement, this document does not resemble a “statement”. Although we were not invited to comment on Appendix 3, we note the NHMRC research cycle does not include “research translation”. We note the UK model incorporates this approach.

 

Page reviewed: 5 January, 2015