Consumer partners

Welcome to Module 1 of the Partnering with Consumers and the Community in Metro South Health Research Online Learning Package. This module aims to provide you with introductory information about partnering with consumers for research. After completing this module, you will understand what consumer partnering in research is, why consumer partnering in research is important, and common benefits and challenges of partnering with consumers.

There are five other modules in this series. two for consumers and three for researchers. These other modules provide a more in depth look at partnering with consumers and discuss some of the practical aspects to support successful and meaningful consumer engagement in research. To start with, it's important to understand who consumers and the community are.

The term consumer is used to refer to a range of people who may be involved in partnering to improve research, including. patients, their family members, carers, friends, members of the public, and consumer organizations such as the Cancer Council or Carers Queensland. Throughout this learning package, we will use the word consumer to refer to all of these groups.

Now we know who consumers are, what does partnering with consumers in research actually mean? Consumer partnering is when researchers and clinicians work together with consumers to conduct research. This approach is a shift away from viewing consumers as passive participants in research, where the research is done to, about, or for them, to including them as active participants in the research process.

where the research is conducted together with or by consumers. Consumers can be involved in the research process in a number of ways. They can partner with clinicians and researchers to make decisions about research priorities, practice. and policy. Some examples of how consumers can be partners in research priorities include contributing to topic selection and ensuring that the research questions being asked are important to the community.

When looking at research practice, consumers can assist in identifying how the research should be undertaken, what measures should be used, how to share or disseminate the results, and how the results will be used to improve healthcare. In terms of research policy, consumers can help organisations to include consumer partnering as a key requirement for activities such as funding allocation and ethical approval.

More information about the diverse ways consumers can be involved in research can be found on the Cancer Council website. You might wonder why consumers want to become partners in research. Consumers may be motivated by their own experience of a healthcare service or a desire to bring a change to the care provided to themselves or others with a similar condition.

Or consumers may want to develop their own skills in areas such as teamwork, research processes and communication skills. Others may choose to engage in research to have their voice heard. influence processes that impact on other people's lives or as a way to give back in appreciation for the care they themselves have received.

Let's hear from one of our consumers telling their story about how they became involved as a consumer advisor for research.

I think that I must have been born with a curiosity gene if there is such a thing, because for as long as I can remember I've always asked lots and lots of questions. Things like, um, well why is it like that? Or what does that mean? How can it be done better? So, in a way, I think I've always found pleasure in learning new things and expanding my knowledge, and I guess that's a form of research in its most primitive state.

I happened to come across a flyer last year that was advertising a half day workshop designed for allied health staff who wanted to improve their understanding of how to involve consumers in both research and innovative projects. So, of course, this piqued my curiosity, Jean, didn't it? And I asked another question, whether I, as a consumer, might be able to attend as well.

But thankfully, the answer was yes. And I suppose I really just wanted to find out what people felt about involving service users in research projects, what their challenges were, how they plan to go about it, and what opportunities might be available for me to participate or contribute from my own personal experiences of healthcare, my background training, and my previous exposure to research projects in the past.

Taking that simple step has opened the door to some interesting developments as I've started to build relationships with healthcare staff who are undertaking research projects and have been brave enough to venture into the world of involving consumers in authentic ways across each of those stages of the research process.

Now that we know who consumers are, what consumer partnering is, and why consumers become involved in research, it's important to discuss why clinicians and researchers should partner with consumers. Firstly, it is a core democratic principle that people who are affected by research have a right to express what and how publicly funded research is undertaken.

It is therefore an expectation, both nationally and internationally, that consumers are involved in all stages of the research cycle. In Australia, there are standards and policies in place that promote consumer and community involvement in research. Key national standards and policies include The National Safety and Quality Health Service Standards, which requires consumers to be involved in the organizational and strategic processes that guide the planning, design, and evaluation of health services in Australia.

The Australian Code for the Responsible Conduct of Research, which states that appropriate public involvement in research should be encouraged and facilitated by research institutions and researchers. The National Health and Medical Research Council's Statement on Consumer and Community Involvement in Health and Medical Research, which states that consumers add value to health and medical research and have a right and responsibility to be actively involved in it.

And locally, the Metro South Health Research Strategy acknowledges the importance of consumer and community opportunities to participate and be involved in research. Viewing it as an integral part of person centered care.

So what are some of the benefits of partnering with consumers in research? Well, we might see improvements in participant recruitment by making research more appropriate and acceptable to potential participants, improving the information provided so that people can make informed choices, and helping to include seldom heard groups.

We could see increased participant retention by helping to ensure that the methods proposed for the research project are acceptable and sensitive to the situations of potential research participants. We might obtain better quality data and data interpretation. By bringing consumers personal knowledge and experience of a research topic or being able to provide a more general perspective.

And we might enable wider and more effective dissemination of findings which could in turn lead to greater uptake of research findings and clinical practice change. It is now common for funding bodies to require some form of community engagement for a research project to be considered eligible for competitive research grants.

Also, many scientific journals now have guidelines around the reporting of patient and public involvement in research. Let's hear some more perspectives about the benefits of partnering with consumers in research.

So one of the main reasons I think it's really important to partner with consumers in research is because the research is about them, and so I think it's the right thing to do. Adding my voice to the knowledge base of what truly genuine consumer involvement looks like, and hopefully helping to confirm that engaging with consumers really does.

lead to improved quality and outcomes in health care. I think another benefit is that the research is better because you get information from people who are similar to the people that you want to participate and they help you to design your research so that it's more appropriate. So a big benefit for me is that it's good to be able to keep on using my mind and being well occupied through learning new things.

So for me personally, also partnering with consumers has been fun. Like that's one of the main things I've gotten out of it is we've actually enjoyed Learning together. As for the benefits for health professionals by partnering with consumers, well, I might not have all of the training needed to do the work of a fully fledged academic researcher, but what I can bring to the table is that I'm creative and innovative.

I can challenge preconceived assumptions. I can help to improve the relevance of research to what consumers really need. And because I see things through a different lens. Perhaps I can bring an additional perspective. There are many benefits to partnering with consumers in research. It is also important for consumers, clinicians, and researchers to be aware of the challenges they may encounter.

Challenges that may impact on consumers willingness to participate in research. Maybe the consumers don't value or recognize their own expertise and the value it brings to research. They may not trust researchers. Or they may have health or socioeconomic circumstances which limit their ability to participate without support.

Challenges that may impact on clinicians and researchers willingness to partner with consumers may be a fear that consumers will bring a biased view, reluctance to share their power and knowledge, or a lack of training and confidence about how to successfully partner with consumers.

There are also factors that may impact on both consumers and researchers. These may include the absence of a shared research language or terminology, preconceived stereotypes or stigma, different agendas between groups, or a lack of time and funding to include consumers using best practice engagement principles.

How do we minimize the challenges facing consumers and researchers? Firstly, Researchers should aim to establish the partnership as early in the research process as possible. It's also important to use language that can be easily understood by everyone, be inclusive and reach out to people from diverse backgrounds, maintain integrity and treat everyone with respect, keep people informed and involved at all stages throughout the research process, And know that one size doesn't fit all.

So keep an open mind and work with people to figure out how best to work together. Here are some top tips for effective consumer partnering in research from firsthand experiences. I

think it's important to learn all you can about best practice consumer engagement and principles. So just give it a go. Try something small and build on that. It doesn't have to be really complicated. It can be starting with something like consumers having a look at your participant information sheet and giving you feedback about whether it's readable, whether they understand it.

I think you need to choose the right consumers for the types of project you're going to do. Um, be clear about the role, uh, and expectations. Really think about engaging consumers early if you can. They really have. Some invaluable input into protocol development and things like recruitment processes.

Find out if there's a need for education or training that would help them to contribute well because well informed consumers actually are able to contribute a lot. So that concludes this module. We hope you've gained some useful information about what value could be added to your research by partnering with consumers.

how consumers might help to shape your research, what barriers might be encountered when it comes to consumer partnering, and how you might overcome them. If you want to learn more about consumer partnering in research, you can listen to the other modules in this series.