Co-design & Collaboration Resources

Co-design and collaboration in stroke trials research brings together the expertise of people with lived experience of stroke, their families and carers, clinicians, and researchers to ensure that our research matters to people with stroke and has the potential to improve health and well-being.

There are many methodologies and frameworks to plan, design, deliver, and evaluate co-design studies, with no overarching gold standard.

To support researchers new to this space, the Stroke Trials CRE researchers and the Lived Experience Advisory Group (LEAG) have curated toolkits, resources, publications, fact sheets, templates, methods, frameworks, and more to support research affiliates engage with people with lived experience of stroke at all stages of the research cycle.

Australian Clinical Trials Alliance Toolkit

The Australian Clinical Trials Alliance (ACTA) have developed a comprehensive toolkit to guide researchers and people with lived experience to work together.

The ACTA toolkit is structured under headings

Understanding

Planning

Undertaking

Evaluating

We have curated some stroke specific resources using the same structure as ACTA to complement this toolkit.

You can also click the link in each section to be taken directly to the corresponding ACTA webpage.

Accessibility

People with lived experience of stroke often need support to participate in co-design and collaborative projects. It is important that we ensure all communication, processes and materials are accessible, especially for those with communication difficulties.

The Aphasia CRE have shared with us their expertise and resources across each of the ACTA sections to support inclusion of people with communication difficulties. At the top level, communication accessibility needs to be considered across all stages of the research cycle in order for successful and inclusive participation.

Fatigue often impacts the participation of people with lived experience and needs to be a consideration at all stages of the research cycle. Good communication between research partners is key. Ask if there are times/days that are better for meetings or activities and if there are any times that should be avoided. Check-in during meetings and allow for breaks.

Important overarching things to consider are; time, delivery of materials, communication partners and peer support, and using a variety of methods of communication.

Understanding

The ACTA toolkit ‘Understanding’ section includes the principles of engagement, why we involve and engage people with lived experience, identifying barriers and facilitators to engagement in your teams/organisations, and how to support diverse and inclusive engagement.

The ACTA Toolkit “Understanding” section provides resources, templates, case studies and guidance for involving people with lived experience in research.

Click here for link to ACTA Toolkit: Understanding

CRE Resources to supplement the ACTA toolkit: Understanding

Stroke affects people in different ways. It is important that researchers take the time to ask and understand how stroke is affecting the individuals they are partnering with, and what their lived experience partners might need to work most effectively.

Click here for advice and top tips from Professor Coralie English, Lived Experience Theme co-chair.

Click here to access the article How to Work Effectively With Stroke Survivors Throughout the Research Process, which outlines 10 recommendations for inclusion of people with lived experience across the whole research cycle.

The Stroke Foundation have created learning modules for both researchers and people with lived experience of stroke to work well together in research.

These resources are free but researchers will require an InformMe login.

Completion of these modules is a requirement for researchers wanting to be connected with our Lived Experience Advisory Group.

Each module takes between 30-60 minutes to complete.

Click here for the module for people with lived experience

Click here for the module for researchers

The terminology for co-design and collaboration can be confusing.

It is important to be clear about what type of collaboration you are looking for and the role you are expecting the person with lived experience to play.

It is also important to be clear with your collaborators that the project and their role is often developed over time, rather than defined before you start.

Good communication is key.

Click below for language we recommend and definitions – based on those developed by ACTA and Telethon kids.

Commonly used co-design terminologyDownload

Inclusion of people with communication difficulties in all stages of collaboration and co-design is essential for accessibility, applicability, and success.

Researchers from the Aphasia CRE (and other research centres) recently published the article below which advocates the inclusion of people with communication difficulty in research should be standard practice. It also outlines barriers and strategies and resources to mitigate those barriers.

Understanding communication barriers at the Understanding phase of research will assist with inclusion.

Below is a link to the article.

Towards the Consistent Inclusion of People with Aphasia in Stroke Research Irrespective of Discipline.

Supplementary items from the article included a resource identifying barriers, offering strategies to mitigate those barriers and resources to support.

Below is a link to the supplementary resource.

Communication barriers, mitigations and resourcesDownload

Planning

Detailed planning is essential to the success of any collaboration or co-design project. The ACTA toolkit ‘Planning’ section provides tools and advice to support you to identify your aims and objectives, where to involve people at a trial level and organisational level, methods of involvement, and importantly preparing a budget.

Click here for link to ACTA Toolkit: Planning

CRE Resources to supplement the ACTA toolkit: Planning

The Stroke Trials CRE recommends roles and responsibilities of all team members and the processes of working together be defined at the planning stages of co-design and collaboration. We recommend developing the following documents to set your team up for success from the start.

A ‘Ways of working’ document can define the best practises of your project team to work well together.

It can include roles and responsibilities, engagement practises, communication methods, accessibility and peer support. This is best developed together where everyone provides input.

Things to think about including here are timing, communication preferences, technology use, inclusion of appropriate breaks.

At a minimum, you need to understand what people need in order to be able to participate fully in your project.

Here is our example ‘Ways of Working’ document, developed during a workshop by research affiliates and Lived Experience Advisory Group Members.

Stroke Trials CRE Ways of Working Document

A Terms of Reference (ToR) document is a formal statement that defines the purpose, structure, roles, and objectives of a project or committee. It outlines the scope of work, timelines, deliverables, and key stakeholders involved in the project.

Ways a Terms of Reference document can support collaboration:

Clarity and alignment: A ToR ensures everyone has a clear understanding of the project’s goals, their roles, and expectations. This alignment is crucial for effective collaboration and prevents misunderstandings that could arise due to varying levels of research experience among team members.
Empowerment and inclusion: By explicitly outlining the roles and contributions of people with lived experience, a ToR validates their importance to the project. It empowers them to actively participate and ensures their voices are heard throughout the research process, fostering a truly collaborative environment.
Accessibility and accommodation: A ToR can identify and document any specific needs or supports required to allow everyone to participate fully. This could include communication strategies, meeting formats, or support mechanisms, ensuring the co-design process is accessible and inclusive for all team members.

Click here for Australian Government guidelines for developing a ToR for your project.

A Personal Operating Manual is another tool for enhancing collaboration in diverse research teams. While a Terms of Reference outlines project structure and objectives, a Personal Operating Manual provides more insight into individual team members’ working styles and needs.

Key components of a Personal Operating Manual can include:

Communication preferences and needs

Optimal working conditions

Decision making styles

Accessibility needs

Feedback and Interaction style

Personal Operating Manuals complement the Terms of Reference by:

Offering individual-level insights to support the project-wide framework

Helping implement inclusive practices outlined in the Terms of Reference

Informing specific accommodations mentioned in the Terms of Reference accessibility section

To ensure inclusion, the Stroke Trials CRE encourages ALL team members to create their own Personal Operating Manual, not just the lived experience team members.

It is important to update as needed throughout the project.

By using Personal Operating Manuals alongside a Terms of Reference, you can create an inclusive and effective research environment that addresses both project goals and individual needs.

See below for an example Personal Operating Manual from our Lived Experience Advisory Group

Personal Operating Manual ExampleDownload

Undertaking

Undertaking includes the activities of collaboration and co-design. Here the ACTA toolkit provides advice on recruitment of people with lived experience, when you need to apply for ethics and how, writing in plain language, training for people with lived experience, reimbursement and the importance of regular and timely feedback.

Our lived experience partners have noted the importance of regular and timely communication. If they are involved in the co-design part of the research cycle there can be many months between project communications. Consider giving a member of the team the role of Lived Experience communication, make this a priority and set reminders for the difference stages of the research cycle.

Click here for link to ACTA Toolkit: Undertaking

If you would like support to include people with lived experience in your project, the Stroke Trials CRE Lived Experience Advisory Group can help. Click on the link below to fill out and expression of interest form and be connected with our Lived Experience Engagement Manager.

Click here to register your expression of interest

Including people with aphasia and other communication difficulties in research projects enhances relevance and applicability.

Aphasia can make it challenging for people to participate in traditional research activities. By designing materials that accommodate people’s communication needs, we promote equity in participation, ensuring that people with aphasia can contribute their valuable perspectives to the research process.

Creating aphasia-friendly resources for research projects is essential to ensure inclusivity and accessibility for people with communication difficulties.

Generative AI tools can be very helpful in adapting text to plain language.

Inclusion of people with communication difficulties in the development of processes, materials, and resources ensures they are both useful and accessible.

The United Kingdom Stroke Association has created ‘Accessible Information Guidelines to assist in the creation of aphasia friendly research materials and resources.

Click on the link below to download a pdf.

UK Stroke Association: Accessible Information GuidelinesDownload

The article, Towards the Consistent Inclusion of People with Aphasia in Stroke Research Irrespective of Discipline: Shiggins et al., includes supplementary materials that you can use to support development of accessible materials and resources.

Information includes advice when preparing to develop resources, linguistic considerations, guidelines on formatting, graphics and video resource production.

Below is a link to the supplementary resource.

Developing resources and materials for people with communication difficultiesDownload

The Collaboration of Aphasia Triallists (CATs) have produced guidance on how to develop video abstracts to disseminate your research results in an accessible way.

Below is a link to the CATs Video Abstract Resources

In Australia, involvement of people with lived experience in research, particularly in the health sector, is highly valued.

While there are no specific regulations mandating remuneration, several guiding principles inform best practice for ensuring that people with lived experience are appropriately remunerated for their time, expertise, and contributions.

The National Health and Medical Research Council (NHMRC) promotes the inclusion of lived experience individuals (patients, carers, community members) to enhance research outcomes.

The NHMRC’s National Statement on Ethical Conduct in Human Research highlights the need for fair and ethical treatment, including proper remuneration and reimbursement. The NHMRC recommends the following when considering remuneration of people with lived experience involved in research:

Fair Compensation
Lived experience contributors should be compensated for participating in research activities such as meetings, workshops, and advisory roles.

Transparency
Research organisations should establish clear remuneration policies, ensuring fairness and accountability.

Consultation
Contributors should be consulted on remuneration decisions to ensure compensation reflects their involvement.

Recognition of Expertise
The expertise of lived experience individuals should be acknowledged, valued, and respected.

Flexible Models
Remuneration models may vary based on project needs and resources, including honoraria, stipends, and expense reimbursement.

Feedback and Evaluation
Continuous feedback from contributors on remuneration practices ensures equity and sustainability.

Remuneration resources

The NHMRC and consumer health organisations from each state have produced renumeration guidelines that can be followed to ensure appropriate renumeration for lived experience involvement in research.

The Stroke Trials CRE recommends reading the NHMRC guidance on involving people with lived experience in research and following the remuneration guideline from the State or Territory where your research is conducted. Click on the links below to find the appropriate remuneration guide for your project.

National

The NHMRC’s statement and guidance on involving people with lived experience in research.

NHMRC Statement on Consumer and Community Involvement in Health and Medical Research

A guide written by Justice Connect that explains the legal considerations and obligations concerning remuneration for lived experience involvement in research.

Justice Connect: Guide to consumer representative remuneration

New South Wales

Health Consumers NSW remuneration and reimbursement guidelines for lived experience involvement in research. Includes definitions, spectrum of involvement with examples, rate per meeting and per hour.

Health Consumers NSW: Remuneration and reimbursement guidelines for consumer involvement in health and medical research

Victoria

Victorian Cancer Care Alliance has produced a cost model including differing levels of involvement, payment per meeting and hourly rate.

VCCC Alliance: Cost Model for Consumer Sitting Fees

Safer Care Victoria: policy document outlining definitions, roles and responsibilities, remuneration and reimbursement processes.

SCV Remuneration for Partners Policy

South Australia

South Australia Health policy document outlining the different activities and levels of involvement for people with lived experience and a schedule of fees.

SA Health Policy: Sitting Fees and Reimbursement for External Individuals Policy

Western Australia

Western Australia Health Consumers Council policy document outlining definitions, procedures, code of practice and a consultant/consumer representative schedule of payments.

WA Health Consumers Council Engagement Policy & Procedure

ACT

ACT Health policy document outlining definitions, best practice and meeting remuneration.

Consumer, Carer and Community Representative Reimbursement Policy Document

Queensland

Health Consumers Queensland position statement on reimbursement and remuneration including schedule of fees per meeting and per hour.

Health Consumers Queensland: Remuneration and reimbursement of consumers Position Statement

Northern Territory

Terms of reference document from the Northern Territory Health, Regional Community Engagement Group outlining definitions and preferred processes for involvement but no suggested remuneration.

NT Health, Regional Community Engagement Group Terms of Reference

Creating accessible research materials that comply with ethical standards is crucial for Australian researchers. Here are some key tips:

Use Plain Language: Avoid jargon and technical terms. Write in simple, clear language that is easily understood by a lay audience.

Provide Clear Summaries: Offer concise summaries of key points, such as study goals, procedures, and potential risks or benefits. Be clear about the project type and the expected involvement (e.g. roles, responsibilities, time commitment, remuneration)

Incorporate Visual Aids: Use icons, charts, diagrams, and images to illustrate complex information, making it more comprehensible. The noun project website offers free icons to illustrate your materials.

Offer Multiple Formats: Provide materials in various formats (e.g., digital, print, large print, video) to accommodate different needs.

Click the link below for advice on developing video participant information from the supplementary files of the article, Towards the Consistent Inclusion of People with Aphasia in Stroke Research Irrespective of Discipline.

Video Participant Information GuideDownload

Ensure Cultural Sensitivity: Be mindful of cultural differences and ensure materials are inclusive and respectful of diverse backgrounds.

Include Contact Information: Clearly state who participants can contact with questions or concerns about the research.

Test for Comprehension: Pilot test materials with people with lived experience of stroke to ensure clarity and understanding. If you need to be connected with someone with lived experience of stroke, contact our lived experience advisory group.

Templates

Both ACTA and Clinical Trials Impact and Quality (CT:IQ) have created templates for participant information and consent forms.

CT:IQ

The inFORMed project template was developed by CT:IQ to support a patient centred, simplified national participant information and consent form (PICF) for the written communication of participant information about research to support informed consent.

Click below to download the inFORMed PICF template to create your own.

inFORMed PICF Template Download

CT:IQ also provide a user guide with advice on how to write a plain language PICF and how to personalise the template.

InFORMed User Guide Download

CT:IQ provide examples of how the template can be used in different research project contexts.

Clinical drug Trial example PICF Download

Qualitative research example PICF Download

ACTA

The ACTA toolkit ‘Resources’ page includes many templates to support the inclusion of people with lived experience in research. Templates include: Expression of interest, consumer involvement agreement, PICF review form for consumers, reimbursement form and consumer involvement planning and evaluation forms.

ACTA Resources Page

There are many frameworks and methodologies researchers can use for co-design, co-production and co-creation. Choosing the appropriate ones for your project can be challenging.

The Stroke Trials CRE recommends affiliates use the Health Cascade Network website to identify appropriate methodologies for their research projects and explore the wide range of tools and training resources available.

Health Cascade resources include a curated open-access database of co-creation literature. In this web resource you will find evidence based, peer reviewed publications that can help you decide which methodology is appropriate for your project.

Health Cascade: Database of co-creation literature

Heath Cascade have also curated a methods inventory. In this web resource you will find >130 activities and tools to use in projects and includes the literature source for each.

Health Cascade: A Co-Creation Methods Inventory: Sourced from Academic and Grey Literature.

CRE research affiliate Dr Emily Ramage has developed an exemplar guide for co-production of complex behavioural intervention specific to the stroke context. Click below to access.

Fit for purpose. Co-production of complex behavioural interventions. A practical guide and exemplar of co-producing a telehealth-delivered exercise intervention for people with stroke.

Evaluating

Again, there is no gold standard method of evaluating and reporting on lived experience involvement. The ACTA toolkit gives advice and resources to define impact, providing ideas for assessment. They also include advice and resources for evaluating both the involvement process and the outcomes or impacts on the project and provide guidance and checklists on reporting lived experience involvement.

Click here for link to ACTA Toolkit: Evaluating

The ACTA toolkit provides a variety of templates to evaluate lived experience at different points of the research cycle.

The consumer involvement form below is a template that can be used repeatedly across the research cycle to ensure that our research partnership is working well.

Consumer involvement evaluation formDownload

The form below can be used to evaluate one-off events or workshops. This will give you feedback for continual improvement.

Evaluation form one off eventDownload

The form below can be used the evaluate the impact of consumer involvement across the whole of the project.

Project evaluation form consumer involvementDownload

The Health Cascade project have developed an infographic that gives ideas of when to evaluate, what to evaluate and which framework to use across the whole research cycle. They also link to the literature.

Health Cascade Evaluation Infographic

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