Resources for Researchers

Overview

Structured conversations on a weighty topic in an informal settings, aiming to seek a range of views on complex issues. Conversation Café’s usually involve between 10-12 people, but can be more people, depending on what you want to achieve,

When might I use this method?

When you would like to get into the heart of a community, in a comfortable setting familiar to the audience. This may be a good option for participants who are new to research, or who don’t spent time in formal research or clinical settings.

Details

The group meets in a public place (such as a café, community centre, bookshop, or library). A host facilitates a conversation about your chosen topic and sets a time for the discussion.

The following principles should be used as guidance:

1. Open-mindedness: listen to and respect all points of view
2. Acceptance: suspend judgment as best you can
3. Curiosity: seek to understand rather than persuade
4. Discovery: question assumptions, look for new insights.
5. Sincerity: speak what has personal heart and meaning
6. Brevity: go for honesty and depth but don’t go on and on

Strong facilitation is required, so that the conversations take a logical flow. It is sometimes recommended that this facilitator is independent from the research group.

There are a number of ways to conduct the café, for example:

• each person speaks briefly to the topic, no feedback or response before progressing to open conversation
• a note taker listens to an open conversation, with one topic per table. Participants rotate frequently and aim to speak to everyone in the room
• each table is given a remit and report back to the wider group

As the from is a café, refreshments, table decorations, and sometimes music give the room a more informal feel.

See how Prevent Breast Cancer took on the question of Health Inequalities in their ‘World Café’ in Manchester Prevent Breast Cancer I Health Inequalities Roundtable

Examples of other Conversation Cafes:

Conversation Café – London Borough of Harrow

Conversation Cafe – OneHE

Overview         

Written Submissions are published to allow people to contribute by writing, gaining wide perspectives on an issue, or to give feedback on a more specific ‘ask’.

They are often used in response to lengthy written proposals but could be submitted in note form or bullets depending on the document.

When might I used this method?

This method allows people to contribute to projects, ideas and proposals without needing to interact with others. It can be useful for those unable or unwilling to participate in group forums, or those who are unable to communicate verbally.

It can also be a good option for participants who are undergoing treatment or who cannot attend other forums due to other commitments.

Details

Written consultations are often used for longer pieces of work, such as proposals or submissions which need exterior scrutiny or feedback.

Participants are given a deadline for comments, along with a format to follow (e.g. paragraphs, comments tracked in the document). They may be asked to respond to specific questions, or be given particular areas of focus, such as accessibility or diversity.

Submissions can be in a traditional letter form, but might also include:

• quick-fire questions on social media
• ‘send a postcard’ (use for short thoughts/answers)
• a ‘thought tree (in public spaces for key words, ideas and short opinions)
• consultation documents (requiring pre-reading and thought)

In this approach, you need to consider:

• What is the best format for the answers you’re looking for?
• Clear instructions which minimise confusion or unhelpful responses

Overview

Exhibitions represent an opportunity for members of the public and patients to co-develop projects with researchers and help them set the agenda in their areas of interest. Exhibitions typically are a storytelling exercise and might include artwork, poetry, videos, or photography.

When might I use this method?

Exhibitions are generally highly engaging, novel, and a less conventional way of working with the public. They can allow researchers to reach new groups of participants and to look at problems in a different way. This method requires specialist advice and input and is highly time and resource intensive.

Details

This approach recognises that the aims and needs of participants are of equal importance to the researcher’s aims, although these are often intertwined.

Exhibitions require planning of the research idea, how and where the exhibition will be staged, and how to measure the impact of the intervention. They can be incredibly time intensive and therefore needs lot of planning. But it can be a great opportunity to engage specific target groups on specific issues.

See how Manchester Cancer Research Centre Partnered with piece of research on facial prosthesis, bringing an exhibition and event to the Oglesby Cancer Research Centre: ‘I’m Still Me’: Art Exhibition

Overview

Town Hall meetings typically bring together between 50-150 people to discuss local, regional or national issues. They can take different formats – from information giving and discussion, to collective deliberation and decision-making. Town Halls may:

• Identify research topics: By engaging with the public, researchers can uncover pressing issues and potential research areas that align with community needs.
• Gather insights: Participants can share their experiences, perspectives, and opinions on specific topics, providing valuable qualitative data for research.
• Involve stakeholders: Town hall meetings can engage various stakeholders in the research process, ensuring that the research is relevant, meaningful, and responsive to the needs of the community.
• Build consensus: The open dialogue and interactive nature of town halls can help researchers build consensus around research priorities and goals.

The whole process can either take place within one room, or groups can gather in many locations around the country or the world. Participants may be selected to be demographically representative of the wider population.

The interchange between the small- and large-scale dialogues is powerful as it allows participants to discuss the issues in a small manageable setting, whilst maintaining the legitimacy of a process involving large numbers of people.

These meetings are especially useful for engaging citizens in planning, resource allocation and policy formulation. These may therefore be for larger programme grants or infrastructure awards.

See how we use Town Halls at the MCRC – Introducing MCRC Town Halls

A Citizens’ Jury is a group of around 12-24 people from all walks of life, brought together to have an honest conversation and find common ground on an issue that matters.

Those involved reflect the wider population in terms of demographics and relevant attitudes. They are particularly effective when decision-making is required, and can take a number of days to achieve successfully.

Citizens’ Juries are a tool for engaging people on broad topics, such as consenting, data permissions, or more narrow topics, such as the direction of a piece of work or research proposal.

They are relatively inexpensive compared to larger deliberative exercises, such as Citizens’ Summits and Planning Cells. Their small size allows for effective deliberation but they are also sufficiently diverse to include a range of perspectives.

See an example of how we have used a citizen’s jury here in Manchester: RAPID-RT | The University of Manchester

Overview

Citizen’s Assemblies are facilitated forums. Participants learn about a topic, discuss it, and come to a decision about it.

When might I use this method?

Citizen’s Assemblies involve high profile issues and topics and should be used to arrive at informed decisions based on competing viewpoints. This could be used for high level policy decisions or highly complex or controversial issues.

Details

Citizen’s Assemblies are made up of a group representative of the population and are therefore generally large groups. An independent Advisory Group contributes to the design and running of the Assembly, ensuring quality of the information presented and balanced viewpoints.

Citizen’s Assemblies are facilitated independently or impartially. They involve three phases:

1. Learning – participants will have a range of knowledge about the topic, including no knowledge, assumed knowledge, and top expertise. Experts present the topic through a range of presentations, representing a range of views. Time is given to Q&A with the experts
2. Deliberation – participants explore their own opinions and develop their understanding based on the information given. Experts give further factual information, or make clarifications, but no opinions
3. Decision-making – the Citizen’s Assembly arrives at a conclusion or multiple conclusions. Decisions are not unanimous and should reflect the range of views held in the Assembly post-evidence

Facilitators ensure that everyone’s view is represented and understood, setting up a comfortable environment for open discussion and challenge. They capture agreed positions as well as any areas of outstanding disagreement.

Citizen’s Assemblies are advisory in nature but are intended to show a considered view from a representative group.

Examples of Citizens’ Assemblies:

About the Citizens’ Assembly on Brexit

Home | Biodiversity Loss in Ireland, Citizens’ Assembly

Overview

Focus Groups are guided discussions of a small group of people. They might be one-off sessions although several may be run simultaneously in different locations. However lots of researchers run a series of focus groups.

A facilitator leads a guided discussion of between 6-12 people to gauge their views and attitudes on the subject. The discussions are normally recorded and a report is produced of the process and results which is then distributed to the participants. Clients or other interested parties may observe the discussions.

Focus Groups provide useful information on how people respond to particular questions or issues but the short amount of time limits the depth of discussion that can be had.

Because of this, they are particularly malleable, and can be done online, in person, and in a variety of settings. They can give candid information about how a group is thinking, and inform not only the direction of your research, but the possible impact that your research could have.

See how we are working with community organisations and charities in Manchester: Focus groups – Can Survive

Overview

This method brings individuals together to have an in-depth discussion about a piece of research.

When might I use this method?

This method can be particularly effective for in-depth discussions which individuals may not feel comfortable sharing in an open group.

It may also be useful for community participants who have particular sets of knowledge or experiences which supplement the skills of the team.

This method is usually a one-off, and if the participant is asked to be involved regularly, should be appropriately included within the wider research team.

Overview

Public Advisory Groups are typically longer, more methodical representative groups, who will work alongside you and your research for the duration of the project.

Not all participants of these groups need to be involved with all activities and are instead meant to be a ‘pool’ of available participants to work with. This is can be helpful in cancer research, where project take a long time to report, and where patient outcomes and availability can mean that attendance is not guaranteed.

When might I use this method?

Depending on your aims, although it is a group which you should work alongside regularly, is typically a time-limited group with a specific purpose. They are there to advise the research portfolio.

A Public Advisory Groups aims to be a representative, consultative body of public and patient participants. They identify public, patient, and community priorities and give free and frank feedback on issues such as deliverability (eg recruitment to a trial) and acceptability (how a research intervention will be received).

The huge benefit of public advisory groups is that ‘lay’ contributors bring vast experience from their own lives and professions, bringing insight and knowledge that the research group cannot provide.

Not all members will be invited to take part in all panel activities. This is why it is important to be clear at the recruitment stage about what is expected of each panel member and what their membership involves in terms of type of contact and frequency of involvement.

Please see a list of partner organisations that you may like to approach, both in Manchester and nationally, to discuss your research:

• Home – 10GM
• Cancer52 | The common voice for rare and less common cancers
• Greater Manchester Cancer Voices Community

Overview

Funding bodies generally require public contributions to research projects and programme. Public advisors and co-contributors are individuals or groups who are embedded into the project. They may be named formally within the grants or bid process, and have contributions to publications.

When might I use this method?

The main benefit of these individuals is that they offer perspectives and value to the team that would be otherwise missing. Patients and the public are often referred to as ‘lay’, but their range of professional and personal experiences can offer:

• design or programmatical support to project
• insights into how to improve quality of life or acceptability of an intervention
• key insights that make the research outcome

The collaborative approach emphasises share ownership and responsibility for the research, creating a co-dependent set of outcomes.

See How to involve people as co-authors, from this East Midlands Academic Health Science Network publication.

Involve – Methods of Public Engagement

Health Data Research UK- Involving and engaging patients and the public

Patient involvement toolkit for researchers | Cancer Research UK

PPI (Patient and Public Involvement) resources for applicants to NIHR research programmes | NIHR

NIHR – Public involvement in NHS, health and social care research

NICE – Public involvement – putting you at the heart of our work

Patient Involvement at Cancer Research UK | Cancer Research UK

How to organise a safe and legal charity event | Macmillan Cancer Support

Prostate Cancer UK: Involvement

Breast Cancer Now Involve people affected by breast cancer in your work

Bowel Cancer UK | Involving Patients | Information for researchers

Christie Patient Centred Research PPIE group (NHS only)

To be successful in your work, you should consider reading and researching the following:

• Do some initial preparation: Respectful Research Charter – this was co-develop with patient and public groups in Greater Manchester
• Undertake some training – recommended sessions are Training – Can Survive [can-survive.org.uk](culturally competency training), UoM/Vocal Inclusive Research training, or search The University of Manchester’s StaffNet webpages for more options
• Understand how to present your work and get a sense of your target groups’ starting points. PPIE contributors are dedicated, engaged, and experts in their field, but may not understand bureaucracies, organisations, and your scientific field
• Work out how you’re going to fund your initial approach (teas/coffees, room hire), and discuss your plan with colleagues to sense check

Working with community groups is rewarding but time intensive. You will need to create a long-term, mutually beneficial relationship in order to do effective work.

You could reach out to the following contacts/links for further advice:

• mcrctraining@manchester.ac.uk (MCRC can provide 1-1 support)
• Home – 10GM
• Bringing People & Health Research Together | We Are Vocal
• Greater Manchester Cancer Voices Community – Greater Manchester Cancer
• Maggie’s | Everyone’s home of cancer care

If you are disease-site specific, spend some time searching for local networks, such as this Colorectal Cancer Group

• Have a sense of what you want to achieve, but be flexible to change
• Identify which groups you want to work with, and think about how you will both benefit from the research process
• Budget well, ensuring that PPIE contributor generosity is acknowledged
• Understand that your deadlines are not everyone’s deadlines – build in time for delay, especially if you are working with people who are undergoing treatment or have lots of other commitments
• See PPIE as part of your day to day work, giving it a time contribution in your workflow
• Ask for advice – expertise in PPIE is accumulated and there is no one-size-fits-all approach

Some funders offer seed funding for these activities. If your research group views PPIE as integral to your work, there may be funding set aside for these activities.

The MCRC runs an ongoing pot for PPIE which is open for calls. Contact MCRCtraining@manchester.ac.uk for more information.

Please note: this call is refreshed annually and closes when the fund is empty.

The funding you need for this initial work does not need to be much, but it’s important first step to creating a long-term, meaningful, and respectful relationship.

A lot of funding bodies have their own policies. More importantly local organisations may have their own payment policies for working with their charity/group.

For baseline guidance, here are some possible resources:

• Budgeting for your patient involvement | Cancer Research UK
• Payment guidance for researchers and professionals | NIHR
• Health Data Research Payment Policy
• Breast Cancer Now payment policy

However you budget your PPIE work, you should ensure it’s fair, mutually agreed, and clear. Consider aspects beyond travel and refreshments, such as standard hourly, day rates, childcare, or remote working fee such as Wi-Fi.

It is important to note that each individual/group will have different expectations and rates. Discussing those expectations so everyone is clear and confident in their roles is important. For example you could create a written agreement to demonstrate this.

If you are not able to meet those expectations, take the time to explain why. Contributors quite reasonably question why a small pot is given to PPIE in a large grant. Taking the time to explain equipment, dissemination, and other non-negotiable costs will build transparency, trust, and understanding.