Partnering with consumers  

When working with consumers, make it clear:

• What can change and what cannot
• What the aim of the engagement is (why are you engaging people and how will this help your project?) 
• What the role of consumers is
• How the engagement activity or committee works

You can identify consumer stakeholders by looking at: 

• National and state data collections (e.g. Australian Bureau of Statistics, Australian Institute of Health and Welfare) 
• Local data, to get an idea of the population demographics in your area – like your local Primary Health Network Needs Assessment, or local health service strategic planning documents
• Your own service data
• Research on groups underutilising services
• People who have recently used or currently using your service
• People already involved in your project during the planning stage 

Actively seek involvement from those not using your service. Think about whether you can engage people through other health and social organisations or community groups (e.g. RSLs, Men’s Shed, parenting groups, support groups, sporting organisations). 

Give yourself enough time to build relationships and engage properly, especially if working with groups who do not engage often with health services. 

Consider reasons why people may not be able to engage in particular activities – like the timing of engagement activities, not feeling culturally safe, lack of trust in health service, discomfort of being in health facilities, distance to health facilities, work/childcare commitments, etc. Adapt your engagement methods to be more inclusive. You may need to consider:

• Timing (e.g. not around holidays, multiple sessions at different times of the day, providing enough time for people to do activities around their busy schedules, after hours engagement) 
• Location (some locations may not be appropriate or be too far to travel). You may need to engage with people in their own space or community
• Multiple methods of engagement to suit different groups: online, face to face, email, phone call
• Will you need multiple engagement sessions with different groups or a  mix of different stakeholder groups? Will a mix of groups e.g. patients and nurses, work in the same session or will you need multiple sessions?
• Providing incentives  
• Working with activities already happening – does the group you want to engage already meet for other reasons?
• How we engage – you might be used to formal agendas and presentations, but community members may not be used to working this way. Informal, flexible agendas and interactive activities may be more appropriate. 

Download this PDF about Practical implementation of flexible engagement to suit the needs of the community. 

• Work with your service/organisation’s Aboriginal and Torres Strait Islander Unit to plan engagement that meets the needs of local communities
• Do cultural safety training

These guidelines and principles refer to research but can also be applied to broader engagement: 

• Ten principles relevant to health research among Indigenous Australian populations | The Medical Journal of Australia (mja.com.au)
• Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities | NHMRC

The level of engagement you use will dictate the tools and methods of engagement.

Here are some examples for each level of engagement from A Guide for Health Staff – Partnering with Consumers, Health Consumers Queensland, and the Western NSW PHN Community Engagement Framework

Share (inform)

• Patient/carer information
• Community engagement conference
• Fact sheets
• Website
• Social media
• Newsletters
• Public displays
• Event 

Acknowledge (consult)

• Feedback on publications
• Focus groups
• Reference groups
• Surveys
• Pubic forums
• Interviews
• Community representatives on committees
• Evaluation surveys 

Explore together (involve)

• Reference groups
• Patient/carer forums
• Safety and quality meetings
• Improvement working groups

Build(collaborate)

• Co-design
• Advisory groups
• Planning workshops
• Participatory decision making

Enable (empower)

• Citizen juries
• Delegated decisions
• Community appointed management committee

Here’s an example

Source: Engaging with Consumers, Carers and the Community – Guide and Resources, SA Health

• Depends on the type of activity you are doing and the diversity of consumers that use your service 
• For feedback on basic written health information, aim to get feedback from at least 5 consumers. You can use the tools on this page to help you.
• For activities involving the review or redesign of how services work you will need more people 
• For larger activities requiring ongoing involvement from consumers, aim to recruit at least 2 people, preferably more if you are working at higher levels of engagement.
  • Health Consumers Queensland recommends that at least 2 consumer representatives are recruited for each activity in order to provide support to each other, provide skills development and mentor more people to take on these roles.

Engagement can take weeks after you consider organization approvals, recruitment, planning, etc. Allow at least 6 weeks, depending on the level of engagement you are seeking. Higher levels of engagement, which may require multiple activities, will take longer.

Besides the other costs that come with engagement activities (venue hire, catering, facilitator fees, etc.), you need to plan for remuneration of consumers involved with your project. 

Consumers provide their valuable time to help with your project, and this input should be recognised. 

Your organisation or service may have a policy about consumer remuneration. 

There is no national agreement on how much to pay people for their time. When deciding on the amount, consider:

• Transport costs
• Time away from work
• Costs of other arrangements (e.g. babysitters)
• People’s expertise

Different methods of recruitment have pros and cons. These include:

Expression of Interest (EOI)

• Open to a broad range of people
• Allows you to gather demographic details 
• Potentially brings in people who have not partnered with your health organisation before

Direct recruitment (asking someone in particular) 

• Quick
• Very specific circumstances match perfectly with an opportunity
• Decreases the diversity if using a “professional” consumer rep
• Gives the impression that we only want to work with certain people

Asking people who have recently used your service

• People have experience of your service (could also limit to people that have had multiple experiences with the service – e.g. second baby, multiple admissions) 
• Easy to access
• May need to get consent from people to contact them after discharge 

Through other organisations or services

• Levers existing relationships people may have with health professionals
• Need to get buy in from other services/organisations
• Consumers may not feel comfortable engaging without the person from the other service/organisation present

Whatever you choose, follow up with everyone that engages with you or the project in some way, even if they don’t end up being involved, and let them know what you are doing and the outcomes of the project. 

Where to advertise

Advertise for specific projects or roles via: 

• your website
• websites of other organisations 
• e-newsletters of community health organisations 
• community newspapers 
• notice boards of health and medical centres (clinics, hospitals) 
• social media
• consider approaching disease-specific organisations or general consumer health groups. 
• consider engaging already registered consumers to recruit peers.

Source: WAHTN Involving Consumers in Health Medical Research Handbook

• Address why consumers would want to be involved 
• Aims of the project
• Information about the service this project is based in
• Who else is involved in the project (other stakeholders)
• Which group of people you want to involve in the project (target group) 
• If any skills or experience is required
• The scope of the consumer’s role
• Commitment required from consumer (time, travel, preparation)
• Timeline of the project
• Reimbursement 
• Contact details 

Considerations for application form:

• Limit questions in EOI application – aim for no more than 6 questions
• Use plain English to write questions
• Provide multiple methods for completing the EOI (online, phone, paper)
• Keep it open for long enough, but not too long (aim for 2 weeks) 
• Communicate with unsuccessful applicants
• May not adequately capture any conflicts of interest or personal agendas

Source: A Guide for Health Staff – Partnering with Consumers, Health Consumers Queensland

Check with your organisation or service. Some examples of forms you may need people to complete before participating in an engagement activity include:

• Privacy agreements
• Code of conduct
• Consent forms
• Media consent forms

• Spend time making sure everyone involved has a clear understanding of the scope and aims of the process and what they are being asked to do. Consumers may not understand how an activity or group works and how much engagement or input you want. 
• Provide support for people participating in activities, e.g. give people a chance to join a practice online meeting if they are new to this, meet people or phone people early to explain the process in more detail, offer to go over project documentation with people.
  Source: WAHTN Involving Consumers in Health Medical Research Handbook
• Do not use jargon in your engagement activities or any documents you send out
• Make it comfortable
  • Don’t be too formal – even group work should have an informal feel to it
  • Be honest if you don’t know something or are worried about something
  • Do short sessions (maximum of 2 hours) if possible
  • Break up activities with food and energiser games
• Each method of engagement must have a way for capturing ideas and outcomes (e.g. dedicated note takers, writing ideas down and collecting these notes, recording, photographs).
• Participants should be given the record of outcomes to review so they know their input has been captured correctly
• Keep people in the loop about the outcomes of the engagement and the process
• Evaluate the process as well as the outcomes (e.g. changes resulting from engagement, building capacity, barriers encountered and solutions, learnings about the system, which methods of engagement work best, what risks needed to be managed)
• Celebrate the value of everyone’s contributions
• Be creative – you aren’t limited to workshops and surveys 
• Group engagement is usually preferred, as long as people feel welcomed. Make sure people are not put on the spot in a group setting and give people other options for engaging if they do not feel comfortable in groups
• If you want feedback on something quite complex you need to give people time to think about it (e.g. you might have a workshop and then send a follow up email asking for feedback, or hold another session) 
• If calling on the phone – don’t use a private number, or tell people when you will call
• Limit the amount of information you send out digitally – people may not have large devices to read long documents on
• Don’t ask people to print anything – if someone needs something in hard copy, mail it to them. 
• Balance the demand you place on participants with enough information for them to give meaningful feedback

A facilitator: 

• is neutral
• encourages participation 
• builds an understanding of the problem
• encourages and guide the process, does not engage in it
• explains the process of engagement/instructs people through certain activities
• keeps discussion on track and within scope
• summarises main points and converges different ideas
• summarises progress during the meeting visually
• keeps the meeting on time.

Tips for facilitators: 

• use evidence as a conversation starter 
• make it fun and engaging – games, role plays, mapping exercises, pictures – get people up and doing something other than listening and discussing 
• keep meetings short or break them up with energiser activities or food breaks
• practice your facilitation skills with colleagues
• get someone else to facilitate if this is not your strength. 

Example – Kidney Health Plan design focus group (submitted by Graeme Turner, Nurse Practitioner, Northern NSW Local Health District)

Depending on the type of engagement you use, you should record the methods you used and the outcomes. 

Some ways to do this:

• Minutes of meetings
• Table of feedback and actions against suggestions
• Survey responses/report
• Workshop summaries
• Photos of engagement activities 
• Written summaries of activities 

Action plans

• Include any suggestions/feedback/requirements recorded from your engagement and whether these were acted on and how. 
• If they were not, include a reason why. 
• Share this with the people involved in your engagement activity.