Chronic disease outcomes and enhanced primary care in seniors and improving medication safety in seniors (65+) consumer panel

Back Ground

Two National Health and Medical Research Council funded research projects conducted at the The University of Western Australia’s School of Population Health used linked state and commonwealth health information to investigate and identify:

  • Evidence on how best to use the efforts of Australian GPs to obtain better outcomes in patients aged 65+ years who suffer from chronic illness
  • Priorities for tackling the current epidemic in Australians aged 65+ years due to side effects of their medications

Consumer and community involvement was an integral component of these two research projects. There was a planned budgeted strategy that included:

  • Community consultations
  • A community group to provide ongoing input and advice
  • Research buddies
  • Stakeholder workshops

What was the purpose of the Consumer Panel?

The Seniors Consumer Panel (also known as a steering group) was established to facilitate ongoing consumer involvement throughout the research projects. The Panel provided:

  • A consumer perspective and input to the research team
  • Ongoing advice and guidance regarding issues of importance to health consumers on long-term illness and medication safety
  • Representative membership on the research management team
"I think the contribution consumers make to discussions on medication safety is reliable and valuable we are able to feedback from a grass roots level about chronic health problems"

Comment from a consumer

Establishing the Consumer Panel

Panel members were identified from attendees of the Community Forums. Due to the overwhelming response of people wanting to be involved in the Seniors Consumer Panel it was necessary to develop a selection process. An information sheet and application form were developed by the Consumer Advocate and researchers with input from the Health Consumers Council.

What is the membership of the Consumer Panel?

The Seniors Consumer Panel membership consisted of:

  • 8 - 10 consumer members
  • Chief Investigator
  • A researcher
  • The Consumer Advocate

In order to represent as many health consumers as possible, the membership of the Seniors Consumer Panel aimed to reflect the diverse groups the research projects would cover. It was considered to be important for consumer members of the Seniors Consumer Panel to be able to:

  • Speak strongly and independently on consumer issues relating to the research projects
  • Have insight into consumer issues that affect a wide range of health conditions, that is, not limited to the condition the member has the most direct experience with
  • Have links to community, seniors or chronic illness support groups

What tasks did the Panel undertake?

The first meeting of the Panel was held in 2007 and discussed:

  • Purpose
  • Membership
  • Terms of Reference
  • Membership / interaction with the research team

The Panel met quarterly for the duration of the project. Tasks and discussions included:

  • Input into the development of a series of focus groups which were held in 2008 to further explore key topics and issues raised by consumers at the three community forums
  • Providing input into the questions and results from the focus groups
  • Packaging and labelling of prescription medicines
  • Attendance at four workshops with researchers and health professionals to discuss research findings
  • Meeting with researchers regarding specific unexplained findings from individual research projects
  • Lobbying and supporting the project to the wider community through attendance at forums and meetings
  • Supporting and/or advocating for changes to policy and practice relating to clear dosing instructions on prescription medicines
  • Presenting about the consumer participation activities in the two research projects at the National Primary Health Care Research Conference in Darwin in 2010
Their [consumers] experiences could potentially provide some ideas as to why we are observing certain results

Comment from a researcher

What did you hope to achieve by setting up the panel?

It was anticipated the Seniors Consumer Panel would provide a consumer perspective and possible explanations about any research findings that were unexplained and did not fit within clinical guidelines.

Further to these planned activities the Seniors Consumer Panel raised several significant safety and quality issues relating to prescription medicines. Specifically these unexpected ‘by-product’s of the consumer participation activities were about the following issues:

  • The use of non-specific dosing instructions on prescription medicines such as:
    • 'Take as directed by Dr' or 'Take as directed when required'
    • The use of Latin abbreviations such as 'bd', 'gid'
  • Confusion about packaging and labelling of generic medicines

The Panel considered non- specific dosing instructions could be a major contributor to adverse medicine events in seniors. Often seniors may be taking multiple medications and instructions may be given during a brief consultation where numerous issues are discussed. They may not always remember or may misunderstand the doctor’s verbal instructions.

There may also be national cost implications if people are hospitalised for adverse medicine events due to this unsafe practice. There has been ongoing extensive advocacy, lobbying and presentations across Australia about this issue to bring about changes to policy and practice since it was first raised by a Panel member.

Both issues have resulted in publications in national and international scientific and consumer journals.

"We consumers can bring about change"

Comment from a consumer

What were the benefits of the Consumer Panel?

Researchers, health professionals and Seniors Consumer Panel members completed a survey on their expectations of the consumer participation activities at the beginning and then the end of the projects. Twenty people responded with nineteen saying their expectations were either met or exceeded.

The consumer and community participation activities in these two projects have provided a good-practice model for involving the community in large research projects.

The impact of the Seniors Consumer Panel has been significant for both the research projects and in bringing about a definite and measurable change in attitude on the benefits of consumer and community participation.

At the conclusion of one of the stakeholder workshops for researchers, health professionals and the Panel, the Chief Investigator stated his appreciation of the Panel and that:

"I will not conduct research in the future without involving consumers and the community as I now believe that consumer input can make a difference"