Ways to involve consumers

What types of involvement are there for consumers?

The range of opportunities for consumer engagement is enormous. It may begin with consumers giving feedback on surveys about your health service and participating in focus groups, but can move on to serving on the Quality & Safety Committee at your hospital or on the selection panels for staff hiring. How you, as a health professional, decide to involve consumers will depend largely on two issues:

  1. What aspects of your service you want to change or improve.
  2. The skill base of the consumers in your service.

The Framework provides examples of activities for involving consumers. A significant part of consumer engagement is understanding and being explicit about the role consumers are expected to fulfil.

See consumer involvement model

What knowledge, skills and experience do consumers need?

  • an experience of cancer with the ability to look beyond their own experience in the health system
  • willingness to discuss their treatment and care with health professionals
  • knowledge of the processes for providing feedback to health services (e.g. annual satisfaction survey, compliments and complaints systems)
  • knowledge about patients’ rights and responsibilities
  • The answer to this question will depend on the purpose of the organisation or activity and the roles expected of consumers. The following tools will assist in matching consumer skills to organisational goals.

Consumer knowledge, skills and experience (for organisations)

Do consumers want to participate?

Many consumers want to have a say in their own health and in the way services are provided. The opportunity to give feedback and improve care is highly motivating for consumers if they believe their input will be heard. Some view it as an opportunity to ‘give something back’ or to ‘improve the experience for others’.

“You get great satisfaction out of being able to help people who are on their cancer journey. And they’re not in it alone: cancer not only affects the person, but also partners and families. It’s really important that, as Australians, we try to make that journey as good as possible…. The quick satisfaction comes from supporting people at a personal level. But of course there’s a whole other level of satisfaction when you can do it on a grand scale.”

—David Sandoe, consumer, Chair Prostate Cancer Foundation of Australia

Link to cancer and consumer organisations.

Finding consumers who can be involved in service improvement

Consider the patients and families from your clinical practice, both current and past. Start a running list of those who have the experience and skills (or who you think could develop the skills). Ask the nursing and allied health staff to contribute names. Consider advertising for volunteers. The person in charge of consumers at your organisation will also be able to help you with suggestions. However, generally you, as health professionals, are the best source of possible consumers from within your organisation, as you know them best.

Read about the recruitment and selection process for consumers

Or see recruitment tools below:

How one consumer involved others....

‘About 13 years ago, we took over the support group at the Sydney Adventist Hospital, where I had my operation. But prior to that we were engaging with people who had suffered the same fate as me, talking to them on the telephone, following up a request from my urologist. So that’s how we started to engage with people. And we realised the most important thing for us to do was to listen to their plight, and where they’re at in their journey, and then apply our experience to that and build on it.

The first thing for us to do in engaging with people and building up people who can work well at all the different levels is to engage with them personally, see what their skill sets are, and then take it from there. That’s our grassroots support group network type approach. The support group network of the Prostate Cancer Foundation of Australia has over 135 groups. It’s a rich source for recruiting people and a stepping stone for people to get involved with advocacy.’

—David Sandoe, consumer, Chair Prostate Cancer Foundation of Australia