Product Details

Author Information

Corresponding Author
Anne McKenzie
The University of Western Australia's School of Population Health
M4301, 35 Stirling Highway
Crawley
Perth, XX 6009
Australia
p: +61 8 6488 8176
anne.mckenzie@uwa.edu.au

Authors (listed in order of authorship):
Hayley Haines
The University of Western Australia's School of Po

Product Description and Application Narrative Submitted by Corresponding Author

What general topics does your product address?

Allied Health, Biological Sciences, Dentistry, Humanities, Management Sciences, Medicine, Nursing, Pharmacy, Public Health, Social & Behavioral Sciences, Social Work, Research, Community, Health Information Management

What specific topics does your product address?

Access to health care, Community coalition , Community development, Community engagement, Epidemiology, Health behavior, Health care ethics , Health care quality, Health disparities, Health education , Health equity, Health law, Health policy, Health services research, HIV/AIDS, Homeless health, Interdisciplinary collaboration, Leadership development , Maternal/child health, Men’s health, Mental health, Minority health, Occupational health, Oral health, Partnership building , Policy development, Prevention, Primary care, Program management , Public & media relations , Race & health, Research ethics, Rural health, School health, Sexual health, Social determinants of health, Urban health, Women's health , Low Income Health, Program evaluation, Prison health, Community-based participatory research, Service-learning

Does your product focus on a specific population(s)?

NA

What methodological approaches were used in the development of your product, or are discussed in your product?

Community needs assessment, Community-academic partnership, Community-based participatory research , Focus group , Participatory evaluation, Qualitative research, Quantitative research, Survey, Interview, Participant observation

What resource type(s) best describe(s) your product?

Best practice , Case study, Manual/how to guide, Reference material (i.e. annotated bibliography), Training material

Application Narrative

1. Please provide a 1600 character abstract describing your product, its intended use and the audiences for which it would be appropriate.*

The Fact Sheet Series contains 22 concise documents which guide researchers, consumers and community members on the ‘how and why’ of implementing consumer and community participation in health and medical research. The Fact Sheet Series can be downloaded as a whole document to provide overall guidance on consumer and community participation in research or specific fact sheets can be selected that are most relevant to the research project. The first Fact Sheet is an overview document with the remaining 21 Fact Sheets being grouped into three sections which cover: the principles of consumer and community participation; methods for implementing and supporting participation; and tools and resources.
Each Fact Sheet covers a specific topic and offers practical advice, tips, and suggestions about what to consider, some include an example of how the topic has been implemented in research. The Fact Sheet Series is designed to increase knowledge for researchers, consumers and community members on basic information about consumer and community participation. They provide practical support and build capacity for researchers to develop and implement plans for consumer and community participation. The plain language used in the Fact Sheet Series ensures they are suitable for researchers, consumers and community members, who may have a wide-range of experiences and are seeking to both increase their knowledge and/or develop plans to implement consumer and community participation in their research.

2. What are the goals of the product?

The Fact Sheets Series were developed with a key goal of providing concise and practical information and guidance on the active involvement of consumers and community members in health and medical research.
The Fact Sheet Series were developed in response to feedback and requests from researchers, students, health professionals, consumers and community members for readily available resources on the ‘how and why’ of implementing consumer and community participation in research.
The Fact Sheet Series aim to inform, support and ultimately empower researchers, students, consumers and community members to increase their knowledge about the principles and methods of implementing consumer and community participation.
It is anticipated that providing information that is readily available and easy to understand will lead; firstly to an increase in knowledge about the importance of consumer and community participation; and secondly to a greater understanding of how the active involvement of consumers and community members can improve the quality of health and medical research.
It is also envisaged that increasing knowledge will translate to researchers and students having confidence and capacity to involve consumers and community members in their research. For consumers and community members, it is intended that providing information about the principles and methods for implementing consumer and community participation will support the process of deciding whether to become actively involved in research.
Currently there are limited resources of this nature available that are suitable for a variety of audiences and addressing the needs of a range of stakeholders such as researchers, students, consumers and community members alike. The Fact Sheet Series were developed to address this gap by providing resources that are useful for a diverse audience.

3. Who are the intended audiences or expected users of the product?

The Fact Sheet Series is designed to provide information to a wide range of stakeholders in the health and medical research arena. The intended users of the Fact Sheets Series include but are not limited to: researchers, students, health professionals, policy makers, funding bodies, health administrators, consumers, community members and non-government community organisations. The Fact Sheets Series is written in plain English and has a limited use of acronyms to increase the appeal to a wide audience who may have diverse needs and uses for resources relating to the implementation of consumer and community participation.

4. Please provide any special instructions for successful use of the product, if necessary. If your product has been previously published, please provide the appropriate citation below.

The Fact Sheets Series has been written to guide the implementation of consumer and community participation within health and medical research. It is not designed to be a tool to recruit participants to a research project. The Fact Sheet Series can be downloaded as one booklet to use as a reference guide. However it has been designed so that specific Fact Sheets relevant to a health research project or user can be selected. The user can then use those Fact Sheets to formulate their own guide for each individual project, aligned with their understanding of consumer and community participation. No special instructions other than careful consideration of the content.

5. Please describe how your product or the project that resulted in the product builds on a relevant field, discipline or prior work. You may cite the literature and provide a bibliography in the next question if appropriate.

The Participation Program at the University of Western Australia’s School of Population Health (the School) and the Telethon Institute for Child Health Research (the Institute) has held a number of workshops, forums, training seminars and other events since it began in 1998. Feedback from these events was used in the development of the Fact Sheet Series (1).
In 2007 the ‘green book’ (2) was developed in collaboration with a UK consumer advocate. This publication documented the lessons learned in establishing the Program at both organisations and gave examples and learning from research projects.
In 2008 the Program hosted the inaugural Involving People in Research national conference. A workshop session attended by over 240 people discussed barriers to participation. A Communique (3) was developed from this workshop and identified training and resources needed to move forward.
In 2009, training workshops for researchers were developed in collaboration with a UK consumer advocate, and 15 workshops (attended by 400 researchers) have since been held across Australia. In discussions and evaluations workshop participants have consistently requested practical guidance in the form of resources and tools.
INVOLVE, (www.invo.org.uk) an organisation that supports patient and public involvement in research in the UK publishes guidelines and reports but no concise documents similar to the Fact Sheet Series outlining methods that can be used to enable consumer and community participation. A wealth of evidence demonstrates that consumer and community participation is being implemented (4, 5). However, the practical support that exists internationally for this is still sparse.
There are many barriers to consumer and community participation for researchers (6, 7). By providing a Fact Sheet Series detailing principles and methods that can be applied to any research project it is hoped that researchers will find it easier to access practical guidance that is readily customised to their project. The Fact Sheet Series recognises the different levels of understanding that researchers, consumers and community members have of consumer and community participation. For those readers who have an understanding of the principles of participation they can go straight to individual Fact Sheets on methods, tools and resources on implementing consumer and community participation.

6. Please provide a bibliography for work cited above or in other parts of this application. Provide full references, in the order sited in the text (i.e. according to number order). .

1. The University of Western Australia School of Population Health and the Telethon Institute for Child Health Research. Achievements in Consumer and Community Participation. Perth 2011. Available from: http://www.involvingpeopleinresearch.org/images/pdf/achievements1.pdf

2. McKenzie A, Hanley R, Consumer and Community Participation in Health and Medical Research: A practical guide for health and medical research organisations. Perth Western Australia 2007.

3. The University of Western Australia School of Population Health and the Telethon Institute for Child Health Research. Involving People in Research Conference Communique. Perth 2008.

4. Brett J, Staniszewska S, Mockford C, Seers K, Herron-MarkS, Bayliss H. The PIRICOM Study: A systematic review of the conceptualisation, measurement, impact and outcomes of patients and public involvement in health and social care research. London: UKCRC; 2010

5. Cashman S, Adesky S, Allen A, Corbum J, Israel B, Montano J, Rafelito A, Rhodes S, Swanston S, Wallerstein N, Eng E. The power and the promise: working with communities to analyse data, interpret findings and get to outcomes. American Journal of Public Health 2008; 98(8): 1407-1417.

6. Staniszewska S, Jones N, Newburn M, Marshall S. User involvement in the development of a research bid: barriers, enablers and impact. Health Expectations 2007; 10(2): 173-183.

7. Thompson J, Barber R, Ward P, Boote J, Cooper C, Armitage C, Jones G. Health researchers' attitudes towards public involvement in health research. Health Expectations 2009; 12(2): 209-220.

8. School of Population Health Consumer and Community Advisory Council, Consumer and Community Participation Policy, Perth, June 2005, Available from http://www.sph.uwa.edu.au/community/consumers-policy

9. Telethon Institute for Child Health Research Consumer and Community Advisory Council, Consumer and Community Participation Policy, Perth, June 2005, Available from http://www.childhealthresearch.org.au/media/288007/consumer_community_participation_policy_tichr.pdf

7. Please describe the project or body of work from which the submitted product developed. Describe the ways that community and academic/institutional expertise contributed to the project. Pay particular attention to demonstrating the quality or rigor of the work:

• For research-related work, describe (if relevant) study aims, design, sample, measurement instruments, and analysis and interpretation. Discuss how you verified the accuracy of your data.
• For education-related work, describe (if relevant) any needs assessment conducted, learning objectives, educational strategies incorporated, and evaluation of learning.
• For other types of work, discuss how the project was developed and reasons for the methodological choices made.

The Participation Program a joint initiative between the School and the Institute has included the following components:
• Senior level support and commitment:
• Dedicated experienced community advocate on staff since 1998;
• Development of a formal governance and policy framework;
• Establishment of Consumer and Community Advisory Councils at the School and the Institute in 2006;
• Budgeted participation activities/roles in research grant applications;
• Development of a range of models for participation in research;
• Creation of nationally-recognised training workshops for researchers;
• Publication of a guidebook for researchers on implementing consumer and community participation;
• Well established networks and links to consumer and community organisations;
• Development of a model for community forums;
• Creation of resources and a website.
All components of the Participation Program has ‘tapped’ into community and researcher expertise and the outputs of the Program, including the development of the factsheets, are the result of collaboration between researchers and the community.
The Health Consumers’ Council, Western Australia’s peek consumer organisation has also been involved in providing an external oversight role to the work of the Participation Program.
The Consumer and Community Advisory Councils were established in 2006 at the School and the Institute in a governance capacity to provide advice and expertise on the research activities at an organisation-wide level. The Councils consist of up to 10 community members (including a member of the Health Consumers Council) who have an interest in the research activities of the organisation, the head of the organisation, senior researchers and a student representative. All members of the Council are selected by a panel which includes consumers and researchers.
The Councils have played a key role in providing input into the development of resources from the Program. The Fact Sheets Series are a natural addition to the ‘green book’ (2) which was written from a series of interviews with people who had been involved in establishing the Participation Program and the experiences of the consumer advocate in developing the program. It includes comments and stories from consumers and community members and case studies from researchers who had been identified as ‘early adopters’ of consumer and community participation in their research projects and activities. It also includes principles and advice about getting started and has a range of tools and templates that were developed during the early stages of the Participation Program. The ‘green book’ has been used as a resource to support researchers, consumers and community members to understand the basic concepts of consumer and community participation and the Participation Program. The Fact Sheets Series used the same successful collaborative and consultative process with researchers, health professionals and community members.
During the 14 years since the Participation Program was established there has been a constant message for the need for practical information about the ‘how and why’ of implementing consumer and community participation in health research. 240 attendees at the Involving People in Research Conference (2008), 400 participants at training workshops for researchers (2009-2011) and 60 consumers at training workshops gave feedback about their needs for access to resources on implementing consumer and community participation. The similarity of this feedback informed the development of a product that has short concise information which gives practical advice about more specific topics on implementing consumer and community participation.
The Fact Sheet Series not only builds on the earlier publication of the ‘green book’ and the evolving Participation Program but also addresses the gap identified by researchers, consumer and community members.

8. Please describe the process of developing the product, including the ways that community and academic/institutional expertise were integrated in the development of this product.

The Fact Sheets were developed as a direct result of feedback and requests from over 1444 researchers, students and health professionals who have attended workshops, conferences and training courses workshops since 2004 at the School and the Institute.
The comprehensive joint Participation Program at the School and Institute outlined in the section above has also enabled the development of extensive networks and links to individual consumers and community members and a wide range of community and non-government organisations. The School and the Institute have over 500 staff involved in research activities that have an awareness of the joint Participation Program. This joint Participation Program across two research organisations provides a unique opportunity to ‘tap into’ both researcher and community opinions. Either group may be called upon in various capacities to give feedback on matters relating to consumer and community participation in research. Established networks with both researchers and community members were fully utilised in the development of the Fact Sheet Series.
Experienced staff working in the Participation Program Unit undertook the first drafting of the Fact Sheet Series using the extensive feedback gathered in the previous years. This feedback largely determined the content. Meetings were also held with senior and early career researchers to validate the proposed content to ensure it would address the needs of a range of researchers. Two core ideologies underpinned the drafting of the Fact Sheet Series:
• the content had to build on other work of the Participation Program and offer consistent information and advice;
• the use of plain English would increase readability and understanding for a diverse range of potential users.
The format used in the Fact sheets Series i.e. the sections outlining the principles, methods, tools and resources is complementary to the content of the researcher training workshops which are offered as part of the Participation Program. The range of methods for implementing consumers and community participation covered in the Fact Sheet Series are based on the experiences at the School and the Institute and examples of consumer involvement from the UK. The individual sheets within each section were created with an objective of providing concise and specific information about a particular topic. Other Fact Sheets within the section offer further information and/or an alternate choice. All individual Fact Sheets have complimentary and supporting information to provide the reader with a choice to access and use only the Fact Sheet they require or to utilise the Fact Sheet Series as a whole document.
During the development phase of the Fact Sheet Series comments and specific feedback on content, readability and usefulness were sought from:
• Senior and early career researchers from both organisations: Professor David Preen, Professor Moria Clay, Dr Jan Payne, Dr Anna Kemp, Dr Rachel Skoss and Dr Andrew Whitehouse;
• Chairpersons of the Consumer and Community Advisory Councils; Mrs Julie Ireland (Institute) and Mrs Barbara Daniels (School)
• All members of the Consumer and Community Advisory Councils at the School and the Institute (http://www.sph.uwa.edu.au/community/consumers-policy/advisory) (http://www.childhealthresearch.org.au/community-engagement/consumer-and-community-advisory-council.aspx);
• Ms Michele Kosky, Executive Director of the Health Consumers Council of Western Australia, an independent non-government consumer advocacy organisation which provides a consumer ‘voice’ on health policy, planning and research (http://www.hconc.org.au/home/home.html);
• Experts in consumer and community participation in the UK: Ms Bec Hanley Director from TwoCan Associates UK (http://www.twocanassociates.co.uk/index.php) and Senior Research Fellow Rosemary Barber and Dr Jill Thompson from Sheffield University.
Researchers, consumers and community members with experience of active consumer and community participation were also invited to contribute vignettes to illustrate their experiences on a particular topic.
Feedback from all of these groups contributed to the final product. The Fact Sheet Series were launched locally at ‘thank you’ events at both the School and the Institute. This was followed up with a ‘launch’ of the Fact Sheets Series during a presentation made at a national conference ‘Consumers Reforming Health’ in Melbourne 2011.

9. Please discuss the significance and impact of your product. In your response, discuss ways your product has added to existing knowledge and benefited the community; ways others may have utilized your product; and any relevant evaluation data about impact, if available. If the impact of the product is not yet known, discuss its potential significance.

The Fact Sheet Series provides practical advice to involve and support consumer and community participation in health and medical research in an Australian context. Currently there is limited information available both in Australia and internationally that provides direct advice about how to implement consumer and community participation within health and medical research. The Fact Sheets are a product of the lessons learned from the application of the principles and a range of methods being implemented within various individual research projects at the School and the Institute. Currently there are 142 consumer and community members actively involved in 19 projects across both organisations. There is a growing body of information about the benefits and merits of integrating consumer and community participation within research but little advice about how to incorporate active participation within specific projects. There are few resources that explain the models and methods of consumer and community participation in a way that makes them easily comparable; aids their application to particular projects; and explains the pros and cons of each model to assist the researcher in their decision making. Early feedback received from researchers at the School and Institute as well as researchers from a range of universities across Australia, has indicated the Factsheets are a useful resource providing practical advice and information that has not been previously available.
The website that stores the Fact Sheet Series has experienced 1988 hits from 49 countries as of 28th March 2012, of which 1266 are unique views. Of the 1266 unique views, 724 visitors from 12 countries including Australia, UK, US and Canada have viewed the Fact Sheet Series, demonstrating interest from the global community. Whilst it is difficult to know who these visitors are, those that can be identified from their internet service providers include 62 different universities, 16 government agencies, and 18 institutes and hospitals. Again this demonstrates a global need and interest in the implementation of consumer and community participation as well as a wide application for this type of resource.

10. Please describe why you chose the presentation format you did.

The Fact Sheet Series has been designed to be user friendly with easily understood information in a readily accessible format. PDFs are easily downloaded and don’t require any other software. The Fact Sheets are designed as 22 separate documents as well as an entire series. This format was deliberately chosen to enable users to have quick and simple access to the section that is relevant to them. Originally it was envisioned the Fact Sheets would be limited to providing information about the range of different methods for implementing consumer and community participation. The content for the Fact Sheets would be informed by examples and experiences within the School and the Institute. The Fact Sheets followed the successful formatting style of the ‘green book’ i.e. plain language, vignettes and case study examples of implementation and practical advice and tips. Once the drafting commenced it became very evident that it would be necessary to increase the topics covered by the Fact Sheets. There was an opportunity to provide information around various methods and tools to researchers but there was an even greater opportunity to promote the importance of consumer and community participation in research and the supporting principles to researchers and community members. Hence a Fact Sheet Series covering 21 topics was created.

11. Please reflect on the strengths and limitations of your product. In what ways did community and academic/institutional collaborators provide feedback and how was such feedback used? Include relevant evaluation data about strengths and limitations if available.

The strength of the Fact Sheet Series is the provision of short concise information that can assist a health and medical researcher to increase and enhance community participation in their work. As it is written in plain language, it is also very accessible to community members and as such, is a valuable tool to understanding the research process and supporting the process of making decisions about becoming involved.
The extensive feedback received from researchers, students, health professionals, consumers and community members was fully utilised in the development of the Fact Sheet Series. Using this feedback ensured that the end product would address requests for easy to access resources being readily available. Covering a range of topics in the three sections of the Fact Sheet Series i.e. principles; methods; and resources which are based on real experiences also promotes knowledge transfer and shared learning to all stakeholders regardless of the extent of their experience and knowledge.
The limitations of using a format of individual sheets within a whole series could be that researchers and community members might only read the individual fact sheet that describes the topic they are seeking information about. Readers may not benefit from accessing other relevant and important information that supports and underpins active involvement outlined in the principles section.
The use of prompts throughout the Fact Sheets to other relevant topics/sheets aims to address any limitation of using a format of individual sheets rather than a whole document. The overview section at the front of the Fact Sheet Series was also written with an aim of providing an index of topics in sections to encourage the reader to explore other topics within the three sections.
Early feedback from the website and researchers and community members who have used the Fact Sheets Series either as individual sheets or a whole document has been very positive. Planning for a formal evaluation of the Fact sheet Series is underway and will be conducted in 2013. A range of researchers, students, health professionals, consumers and community members will be surveyed about the usefulness of the resource. Information on further topics to include is also being collated and will be used as part of the evaluation process. The information from the survey will inform future resource development.

12. Please describe ways that the project resulting in the product involved collaboration that embodied principles of mutual respect, shared work and shared credit. If different, describe ways that the product itself involved collaboration that embodied principles of mutual respect, shared work and shared credit. Have all collaborators on the product been notified of and approved submission of the product to CES4Health.info? If not, why not? Please indicate whether the project resulting in the product was approved by an Institutional Review Board (IRB) and/or community-based review mechanism, if applicable, and provide the name(s) of the IRB/mechanism.

The Fact Sheet Series has been developed as a direct result of collaboration between research and community participants in the Consumer and Community Participation Program at The University of Western Australia's School of Population Health (School) and the Telethon Institute for Child Health Research (Institute). The key task of the Participation Program is to support researchers and community members to work in partnership to enhance the quality of research through consumer and community participation. The aim of the School and Institutes’ Consumer and Community Participation Policy (8,9) is to build partnerships in which consumers, community members and researchers shape decisions about research priorities, goals, methodologies, questions, and dissemination of results. The Policy also states:
? Consumers and the community will be acknowledged as a key stakeholder in all research projects undertaken at the School and Institute.
? Consumers, the community and researchers will work together to add value to research at the School and Institute.
? Partnerships between consumers, the community and researchers will be based on mutual respect for one another’s different knowledge and experience.
? Partnership roles will be decided by consultation between consumers, community and researchers.
? Consumers and community members will be provided with all information related to fulfilling these roles.
The development of the Fact Sheet Series is aligned with this policy.
The School and the Institute’s Consumer and Community Advisory Councils and the Health Consumers’ Council, Western Australia’s peak health consumer organisation worked in collaboration with researchers and the Participation Program staff to develop the Fact Sheet Series. This has resulted in a good practice example of collaborative work that is based on shared respect and acknowledgement. All collaborators have been notified of the intention to apply for publication and approve of submitting the Fact Sheet Series to CES4Health.info.