How to involve

There are a variety of methods you can use to involve consumers and the community in shaping your work. These may range from an informal chat with someone with experience of the research topic or issue (e.g. via patient forums or social media) to co-production of research with consumers or consumer organisations.

The method you choose will depend on:

• Whether you are looking for one-off or ongoing support from consumers
• Whether you wish to involve consumers in an advisory capacity or whether you wish to share decision-making*
• Whether you want overarching input (e.g. across trials) or input on trial-specific activity
• If you want qualitative and/or quantitative insights
• The amount of time you have and your budget

* Advisory or decision-making? - It is worth considering whether you are looking for opinions and advice - where consumers may inform decision-making but do not have decision-making authority, or whether you wish to share decision-making authority– e.g. consumers sit on committees with ‘executive power, such as Trial Steering Committees.

It is generally recommended that for more formal or long-term involvement activities, you draw up Terms of Reference as this ensures that both parties are fully aware of the level of involvement and the expectations of each party.

Using qualitative research methods for consumer involvement

As described in the ethics review and involvement webpages, the goals of research and consumer involvement may be easily conflated. Research and consumer involvement goals can be combined and achieved in a single activity, but even if they are not, the adoption of research methods may be useful when consumer involvement activities are conducted. In their paper, Rolfe et al describe how qualitative research methods can be used to increase the rigor of consumer involvement activities, especially when researchers wish to gather complex consumer insights on a topic. Qualitative research methods, such as recording of sessions (with consent) with verbatim transcription, coding and thematic analysis can be utilised (Tong et al 2008).

Choosing your involvement methods

A variety of methods can be used to involve consumers and the Consumer and Community Health Research Network provides examples. You may need to be flexible when choosing your involvement methods to accommodate consumers preferences. For example, consumers that do not wish to attend meetings or be part of groups may be willing to join a ‘reader’s panel’ and review patient-facing materials from home. Over time, you may well use more than one method to fulfil your ‘involvement aims’.

One off or ad-hoc consultation

Interviews are a good way to build rapport and gather rich information. You can explore a consumer’s experiences, perspectives and feelings in greater depth than some other methods.

Interviews can be face-to-face or over the phone and can be structured, semi-structured or unstructured.

Having a script can help you feel and look prepared and you can access a sample interview script below. You should ensure your questions are related to your aims and objectives and make sure you provide enough information and support to each consumer you are interviewing. For example, if the topic is complex, it may be useful to send out some pre-reading material. You can find some guidance in writing effective questions below.

A detailed discussion group session plan is often useful and you can access one here. This will help ensure your questions and activities link to your involvement aims and objectives. Make sure you and your colleagues are clear about how the discussion group will run and everyone’s roles and responsibilities.

Forums are one-off or occasional meetings with community members or consumers who have a common or shared interest to ask for their views or input. Forums can be a good way of accessing input from large groups of people in a short time.

Ongoing involvement

Consumer representatives on trial groups: Collaborating with consumers by appointing consumer representatives to your trial group is a great way to get ongoing feedback. Over time you’ll build strong relationships and a better understanding of patient experiences. If using this method, try to involve two or more people so they are not isolated and can support each other. This also brings a wider range of perspectives to the group.

If you plan to involve consumer representatives in a trial group, ideally you should:

• include the purpose of consumer involvement in the Terms of Reference* for the group
• Include more than one consumer representative so that peer support is available
• put together a role description to help you find the right person (or people)
• provide guidance to the Chair of the group/committee on chairing meetings with consumer representatives
• provide scientific/peer mentorship to help those you involve understanding the clinical aspects of the trial/research for which the group is responsible
• make sure deadlines are clear
• be clear about the proposed time commitment

* Two examples can be accessed here; Australasian Gastro-Intestinal Trials Group (AGITG) and Better Evidence and Translation – Chronic Kidney Disease (BEAT-CKD).

Consumer Advisory Panels and Groups: Provide advice at a strategic level across an organisation, for example, helping develop a coherent program of trials in a given therapeutic area. They support partnerships between organisations, researchers and consumers. Consumer advisory panels generally include between six and fourteen members. Representatives of the panel may also be members of trial-specific groups (e.g. research steering/advisory group), allowing consumers to discuss a much wider range of views and provide more robust and varied feedback across a trial’s lifecycle. Involving people who are connected to, or are members of a consumer organisation can bring a wider perspective of the organisation to the research team.

Consumer advisory panel members are usually people who feel confident enough to speak out when meeting with a group of professionals and experts. The role of consumer representatives on the panel will vary but generally, their remit is to ensure that discussions consider the consumer perspective and that ‘patient benefit’ is central to the project. The considerations for involving consumer representatives on consumer advisory groups are similar to those for trial groups (see above) and further outlined in the ANZCHOG/PICs Toolkit for Participation and Engagement.

A template for a consumer involvement agreement can be downloaded here.

Further Reading

• Rolfe, D et al. Using Qualitative Health Research Methods to Improve Patient and Public Involvement and Engagement in Research. Research involvement and engagement 4.1 (2018): 49.
• Tong, A et al. Patients’ Priorities for Health Research: Focus Group Study of Patients with Chronic Kidney Disease. Nephrology Dialysis Transplantation 23.10 (2008): 3206–3214.
• Hickey, G et al. Co-Production from Proposal to Paper. Nature7725 (2018): 29–31.
• NIHR/INVOLVE: Public Co-Applicants in Research: Guidance on Roles and Responsibilities.
• NIHR/INVOLVE: Guidance on Co-producing a Research Project.