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Operationalising a model framework for consumer and community participation in health and medical research

Operationalising a model framework for consumer and community participation in health and medical... The Consumers' Health Forum of Australia and the National Health and Medical Research Council has recently developed a Model Framework for Consumer and Community Participation in Health and Medical Research in order to better align health and medical research with community need, and improve the impact of research. Model frameworks may have little impact on what goes on in practice unless relevant organisations actively make use of them. Philanthropic and government bodies have reported involving consumers in more meaningful or collaborative ways of late. This paper describes how a large charity organisation, which funds a significant proportion of Australian cancer research, operationalised the model framework using a unique approach demonstrating that it is both possible and reasonable for research to be considerate of public values. care, and rapid technological advances in diagnostic, clin- Background The National Health and Medical Research Council ical practice and treatment options[3]. (NHMRC) is Australia's national independent agency responsible for the overall development of research strat- Actively seeking the views of consumers regarding health egy and the allocation of the vast majority of health and research is now recognised as an opportunity to access val- medical research funding [1]. Recently the NHMRC uable untapped knowledge, and a means of improving announced that it would make changes to its funding the relevance and translation of research into practice and processes in order to better align health and medical of making research organisations more accountable [4,5]. research with community need, and improve the impact Consumer perspectives trigger consideration for the wider of research [2]. A commitment such as this signifies an environmental, psychosocial, and behavioural contexts of important culture shift toward greater public involvement people's lives [6]. Further reported benefits include a in health research. This shift is brought about by a range greater acceptance and uptake of research findings in the of factors including demands from an increasingly edu- community, and more efficient use of research resources cated and aging population in growing need of health [7,8]. Page 1 of 6 (page number not for citation purposes) Australia and New Zealand Health Policy 2007, 4:13 http://www.anzhealthpolicy.com/content/4/1/13 Approaches to genuine consumer participation in health This paper describes how a large charity organisation, research are evolving. Past approaches were based on a which funds a significant proportion of Australian cancer false separation of expert from lay person with corre- research, operationalised the model framework using a sponding activity tending to place the parties in active and unique approach. reactive roles. Consumers were traditionally involved in symbolic or passive ways, such as sitting on research com- The Cancer Council NSW Consumer Involvement in Research Project mittees, as research subjects, or as fundraisers for research dollars [9]. Recently, philanthropic and government bod- Influencing the direction of research into the causes, pre- ies have both reported involving consumers in more vention, optimal treatments and support for cancer suffer- meaningful or collaborative ways including recognising ers is a major goal of a number of Australian cancer research opportunities through participation in research consumer advocacy groups who believe that consumers agenda setting meetings and workshops, to identifying can add significant value to research through their active research needs, evaluating research hypotheses, commu- participation [18,19]. The Cancer Council NSW nicating results and supporting the incorporation of (CCNSW) believes it is very important that consumers appropriate research findings into practice [9-11]. Often, and the wider public value its research, which is princi- more than one participation strategy is reported [9]. pally financed through charitable donations. Consumers have always been involved, to varying degrees, across a Consumers face particular challenges when they become range of CCNSW research processes, however it was felt involved in health research. Some of the barriers experi- that important opportunities existed for improvements in enced include lack of confidence in their decision-making this area. Collaboration between the peak NSW cancer ability in relation to research and a lack of understanding advocacy organisation, Cancer Voices NSW (CVN) and and education about research and research governance. the Cancer Council NSW, led to an approach that would Neglecting to involve consumers in research has previ- allow consumers genuine input into the allocation of ously led to adverse patient outcomes either as a direct funding for CCNSW research including the establishment result of poorly designed or implemented research or as a of a dedicated consumer review panel and specific con- result of absent or poor communication of research out- sumer review criteria. comes [12,13]. Goodare and Chalmers provide convinc- ing arguments for improved levels of consumer The specific aims of the Consumer Involvement in Research involvement through descriptions of 'real life' conse- Project were to: quences of overlooking consumers in research processes [12,13]. • Assess consumers', non-commercial financial donors' and the public's views on what they value as important in A model participation framework deciding what research should be funded. In Australia the importance of consumer participation in research has been recognised in a number of reports and � Develop a set of criteria suitable for use by cancer con- initiatives [14-16]. In partnership with Australia's peak sumers and members of the public to rate research appli- independent organisation representing consumers on cations submitted to CCNSW for funding. national health care issues, the Consumers' Health Forum of Australia (CHF), the NHMRC has recently developed a � Identify the type of training that may be required to model framework for Consumer and Community Partici- assist consumers to participate in the research grant review pation in Health and Medical Research [17]. The existence process. of a model framework in any field recognises the impor- tance of that field, and is often evidence of seminal think- � Establish a consumer panel whose trained members ing in itself. At a minimum, the framework is intended as would effectively review, apply specific criteria and give a a resource to provide advice and practical information to ranking to CCNSW research grant applications. support and promote consumer participation in research in Australia. To be helpful, a framework generally has to � Identify suitable research governance arrangements that be relevant to practice and adaptable to local structures, formally incorporate public values in research funding environments and needs. The application of any model decisions. framework is subject to operational realities and con- Aligning the Consumer Involvement in Research Project straints. In addition, frameworks may make little impact on what goes on in practice unless relevant organisations with the model framework actively make use of them. A model framework is by its The CCNSW project will be described in relation to each very nature an evolving entity that can be extended and of the four fundamental components of the NHMRC/ improved over time. CHF model framework. The four components are consid- Page 2 of 6 (page number not for citation purposes) Australia and New Zealand Health Policy 2007, 4:13 http://www.anzhealthpolicy.com/content/4/1/13 ered essential for successful consumer involvement in sumer involvement in the CCNSW review process. In the research. past, CCNSW research funding decisions were based solely on scientific merit criteria that fundamentally esti- Model framework: Key component 1 mate the potential success of research through an assess- Both senior leadership and operational capacity will underpin ment of scientific quality and the ability of the success in developing consumer and community participation in investigator to conduct the research. A number of national research. Whilst all researchers have a part to play in develop- specialty committees covering a range of research disci- ing consumer participation, it is helpful to have a designated plines assigned numeric ratings to the relevant funding person who is responsible for ensuring progress at an organisa- applications. Consumers were not involved in the review tional level and who can facilitate the attempts of researchers of CCNSW research grant applications against scientific and consumers to work together. merit criteria. As public accountability inevitably requires research funds to be properly administered to those with In mid 2004 the CCNSW Board of Directors, considering the highest likelihood of success, it was necessary to main- a proposal put forward by the Chair of Cancer Voices tain the integrity of the scientific review process. NSW and recognising the value of consumer participation in the direction and process of research, affirmed the Can- It was agreed by all parties that the review of research cer Council's commitment to this issue by endorsing an grants would involve a two-stage assessment process with investigation into a workable organisational solution, a difference existing in the membership of the two layers including any associated structural and process changes, of committee structures. The two tiered structure, which to involve consumers in the research grant review process. allows the CCNSW to strike a balance between funding A senior staff member, who was assigned initial responsi- research of significant scientific merit, and research judged bility for development of the concept, saw the initiative especially relevant by consumers is provided in Table 1. It through to completion and continues to provide advice is a workable structure for CCNSW because the demand regarding changes and enhancements to the consumer for research funding consistently exceeds the supply of review process. For the most part, this staff member CCNSW funds and choices have to be made, even assumed day-to-day responsibility for the progression of amongst applications that have significant scientific the project, made sure all decisions considered the needs merit. of relevant parties who would be affected by required changes and was to all intents and purposes confined to Rather than scientists and consumers collectively deciding this one project. According to the complexity theory [20], on funding outcomes based on scientific merit, an inde- placing a large number of people on a single project cre- pendent consumer structure and the identified public ates more interplay than progress. value measures would allow consumers the opportunity to weight research applications based on criteria relevant Supporting structures such as a project advisory commit- to them. Far from requiring significant organisational tee and research team, both of which included informed change and being inherently complicated, the strength of consumer representatives, were established to guide the the selected approach i.e. the creation of a secondary necessary changes to support the consumer review of review process, allowed existing structures to remain, research grant applications including advising the devel- while fully supporting consumer choices. opment of necessary tools, guidelines, education materi- als and evaluation and reporting procedures. A separate It was acknowledged that researchers, by nature of being research team led an investigation to identify the values human, create and maintain particular norms, values and deemed by consumers and the public to be important in culture within their area of influence. It was found that an guiding lay people in objectively judging the value and independent consumer structure in which consumers merit of different research. The prevailing public and con- were able to openly contribute to discussions and negoti- sumer needs were to become the 'consumer review' crite- ations amongst consumer peers had a more informal and ria within a formal appraisal tool to guide lay people in unrestricted atmosphere. Consumers, rather than feeling objectively judging the value of different research. they are required to follow the lead and opinions of researchers, now have an objective say in the research ulti- Model framework: Key component 2 mately funded by the CCNSW. It also means that there is Building consumer and community participation into the struc- no expectation that consumers should develop any tures of research funding bodies, organisations and teams will sophisticated expertise in scientific review criteria such as strengthen and support its implementation. research design, methodologies or analyses. Their 'exper- tise' is their ability to provide an informed consumer per- Existing administrative and cultural characteristics were spective to the decision-making process. CCNSW key considerations in the development and fit of con- commitment to consumer participation in research review Page 3 of 6 (page number not for citation purposes) Australia and New Zealand Health Policy 2007, 4:13 http://www.anzhealthpolicy.com/content/4/1/13 Table 1: The Cancer Council NSW grant review process Step 1: National Health and Medical Research Council (NHMRC) review Applicants for research grants must demonstrate that the research has the relevant approval (eg human ethics, animal ethics, bio-safety) from a recognised research ethics committee before a grant is funded. Specialty research committees review research grant applications based on scientific merit criteria and give a rating and ranking to eligible applications which are then forwarded to CCNSW for a further assessment against consumer review criteria. Step 2: Consumer review A trained Consumer Review Panel assesses the eligible funding applications (pre-selected through the scientific review process) based on consumer review criteria and assigns a separate 'public value' weighting to each. An overall priority ranking for the applications is developed identifying those that best satisfy the consumer review criteria. Step 3: Cancer Research Committee recommendations The Cancer Council's Cancer Research Committee (CRC) formally reviews funding applications that have been assigned a priority ranking against both scientific merit and consumer review criteria, and makes final funding recommendations to the CCNSW board. In making their funding recommendations, the CRC gives the rankings from each group equal weighting and assesses any major discrepancies between consumer and scientific review to ensure that the final list of fundable projects is the most appropriate. was built within the existing review framework while pro- The commitment and ongoing support of key consumers, viding an important level of consumer autonomy. particularly the time and opportunity costs, also need to be factored into an assessment of the resources required to Model framework: Key component 3 successfully undertake a project of this nature. Formally Resources are needed to help consumer and community partic- registering as volunteers of the CCNSW, consumers have ipation to work well. been significantly involved over many months in the gen- esis, conduct and promotion of this initiative. The active, The costs and benefits of consumer involvement must be enthusiastic involvement of this group continues unwa- identified. Once the project strategies were agreed, a vering today. While the CCNSW volunteer reimburse- detailed written plan was developed, including defining ment policy provides for full compensation for all out of the work requirements, establishing a division of respon- pocket expenses incurred as a result of volunteering for sibilities, and quantifying the types and numbers of the CCNSW such as phone calls, motor vehicle expenses, resources required, such as staff time requirements. This parking, child care etc, volunteers offer their valued serv- approach ensured that all project activities and necessary ices willingly with no expectation of any additional pay- resources were properly defined. The more tangible ment. resources used in the project such as the research contract Model framework: Key component 4 with our university partner, training manuals, mailouts and other administrative costs etc were easily identified Developing and sustaining consumer and community participa- and represented known costs to the organisation. Labour tion requires changes to structures and attitudes, which take costs were more difficult to quantify and initial assump- time and commitment. tions under-estimated the actual outlay in this area. It was recognised that effective consumer participation in Organised consumer review of research relies on the com- research requires adequate support, knowledge, skills and mitment of a range of staff right across the organisation. resources for both consumers and researchers. A core Staff responsibilities include the coordination, training expectation of consumer participation is that they will and management of the consumer review panel, and com- wish to participate. The independent consumer panel municating processes, progress and problems to research- charged with reviewing research applications was estab- ers, CCNSW Board and management. Staff also have lished through a voluntary 'opt in' and formal assessment responsibility to support the practical needs of consumer basis. To minimise the effect of real-world factors such as panel members, serve as resource persons throughout the differing levels of experience and expertise among poten- review process, review training program and manual con- tial members, applicants were purposefully selected based tents, and consider ways to continually improve the con- on a number of aspects. These included whether they had sumer involvement procedures and systems. an interest in cancer research, a willingness to familiarise Page 4 of 6 (page number not for citation purposes) Australia and New Zealand Health Policy 2007, 4:13 http://www.anzhealthpolicy.com/content/4/1/13 self with research terminology, disciplines and concepts, the wider community. Factors that were found to be very experience in consumer centred cancer groups and organ- important to consumers include the level of positive isations, and the ability to keep up to date with current impact on human lives, whether the research could be consumer issues via consumer networks and associations. applied in the real world and if it would be available to all who could benefit by it, how soon the research was likely There was also a need to develop consumer panels in ways to be available in clinical practice, and whether consumers that created an ongoing commitment to organisational were involved. Training and information in the under- goals. This was achieved through the development of for- standing and use of the review criteria is provided to con- mal terms of reference, comprehensive review guidelines sumers and researchers. The first year of the consumer and the provision of adequate training and information. review process led to the funding of three out of twelve To prepare consumers to review research funding applica- applications that would not have been previously consid- tions, all necessary knowledge and skills, topics, tasks, and ered, but which better served the needs of the community. assessment requirements were identified and developed into a comprehensive annual 2-day training workshop, It has taken over two years of planning, researching, test- which is mandatory for all consumer review panel mem- ing and retesting to reach the current level of consumer bers. The aim of the training, which is based on general involvement in research review at the CCNSW. adult learning principles, is to ensure that participants: Limitations � Understand CCNSW research mission and its extramu- While the Consumer Involvement in Research Project success- ral research activities; fully involves consumers in a responsive research funding grant program, it may not be applicable to commissioned � Are familiar with key research concepts and terminology research initiatives aimed expressly at meeting identified required to participate in the consumer review process; research and development priorities. � Understand the consumer panel member role and Conclusion responsibilities for participation in the consumer review Relatively unstructured consumer involvement in research can take a great deal of time and effort to examine process. and sort for valuable insights, and often does not develop A training manual with a large variety of printed materials into a tangible product that readily identifies both the has also been developed to supplement the training and process and outcomes of consumer involvement. The provide a ready reference of essential information to assist NHMRC/CHF model framework provides practical advice consumers in undertaking research review. on structure using four key components that are consid- ered necessary for effective consumer involvement in In addition to the training requirements, consumer panel research. The CCNSW initiative provides a clear example members suggested that the review of research grant sub- against the four key components of the model for one par- missions would be made easier if they were provided a ticular initiative, namely research funding review. We consumer friendly abstract explaining the scientific basis believe this example is a valuable addition to the steadily of each application in laymen's terms. This is now a increasing number of soundly grounded mechanisms for requirement of all CCNSW research project grant applica- consumer involvement in research. tions. Information, including examples of well-developed lay summaries is included in the initial funding applica- It has been reported that models for engaging consumers tion form. Researchers are informed that it is in their best must look ahead and contribute to long term goals, they interest to provide adequate detail in the lay summary, as must aim to deliver desired changes in the real world, be consumers are not expected to have a science or research fair and take account all interests and not be afraid of background or to fully read (or necessarily understand), experimentation [21]. The CCNSW consumer review the original research applications. To their credit the process is a long-term solution to issues where consumers majority of researchers who have applied for CCNSW and researchers begin at disparate levels and have differ- funds in the past two years have readily responded to the ent priorities. The project originated in partnership with different needs of consumers. consumers and has required considerable conceptual, financial, human and infrastructure resources. It places The consumer review criteria, which were designed to consumer participation within a workable, respectful and assist the consumer panel members to judge research pro- lasting structure. Consumer involvement in research posals for funding, were developed and established over funding review at the CCNSW is now a committed, sys- nine months of research [22] to determine what aspects of temic practice underpinned by prevailing public values. It research were important to those affected by cancer and to Page 5 of 6 (page number not for citation purposes) Australia and New Zealand Health Policy 2007, 4:13 http://www.anzhealthpolicy.com/content/4/1/13 18. Cancer Voices NSW [http://www.cancervoices.org.au/]. accessed is a model that is eminently translatable by other research 2nd May 2007 funding organisations. 19. Breast Cancer Action Group NSW [http:// www.bcagnsw.org.au/index.html]. accessed 2nd May 2007 20. The ePMbook [http://www.epmbook.com/index.html]. accessed Acknowledgements 2nd May 2007 This project was undertaken under the auspices of The Cancer Council 21. 3rd National Health Policy Roundtable: Engaging Consum- New South Wales' Centre for Health Research & Psycho-oncology ers In Health Policy: Assessing Models & Options 2005 [http:/ (CHeRP), with funding from The Cancer Council NSW and infrastructure /www.aihps.org/component/option,com_docman/task,doc_view/ gid,33/Itemid,86/ support from the Hunter Medical Research Institute. Cancer Voices NSW, #search=%22model%20framework%20for%20consumer%20and%20 the peak independent cancer consumer advocacy organisation in New commu nity%20participation%22]. The Australian Institute of Health South Wales, Australia, was instrumental in the genesis of project and, Policy Studies (AIHPS) accessed 2nd May 2007 through its Chair, Sally Crossing, was also actively involved in the conduct 22. Saunders C, Girgis A, Butow P, Crossing S, Penman A: Beyond Sci- entific Rigour – funding cancer research of public value. and promotion of the project. Health Policy Journal (UK) in press. References 1. National Health and Medical Research Council Amendment Bill 2006: Commonwealth of Australia 2006 [http://www.aph.gov.au/Library/Pubs/ nd bd/2005-06/06bd126.htm]. Parliamentary Library accessed 2 May 2. Accelerating the Pace of Health and Medical Research: [http:// www.nhmrc.gov.au/news/media/rel05/acelresearch.htm]. accessed nd 2 May 2007 3. Opening Address to the 2nd International Conference On Healthy Ageing and Longevity The Minister for Ageing, The Hon Julie Bishop MP 2005 [http://www.health.gov.au/internet/ministers/ publishing.nsf/Content/health-mediarel-yr2005-jb- bissp180305.htm?OpenDocument&yr=2005&mth=3]. accessed 2nd May 2007 4. Tallon D: Consumer involvement in research is essential. BMJ 2000, 320:380. 5. Congressionally Directed Medical Research Programs: Consumer Involvement [http://cdmrp.army.mil/cwg/default.htm]. accessed 2nd May 2007 6. Minogue V, Boness J, Brown A, Girdlestone J: The impact of serv- ice user involvement in research. Int J Health Care Qual Assur Inc Leadersh Health Serv 2005, 18(2–3):103-12. 7. Entwistle VA, Renfrew MJ, Yearly S, Forrester J, Lamont T: Why involve consumers in research? Lay perspectives: advantages for health research. BMJ 1998, 316:463-466. 8. Smith R: What Information I would want as a patient (and what I'd get in Britain) 2003. [http://resources.bmj.com/bmj/ nd interactive/talks]. accessed May 2 2007. 9. Maslin-Prothero S: Developing user involvement in research. Journal of Clinical Nursing 2003, 12(3):412-421. 10. National Health and Medical Research Council (NHMRC): Sum- mary Statement on Consumer and Community Participa- tion in Health and Medical Research. Commonwealth of Australia 11. Boote J, Telford R, Cooper C: Consumer involvement in health research: a review and research agenda. Health Policy 2002, 61:2133-236. 12. Goodare H, Smith R: The rights of patients in research. BMJ 1995, 310:1277-1278. 13. Chalmers I: What do I want from health research and researchers when I am a patient? BMJ 1995, 310:1315-8. 14. Griffiths K, Christensen H, Barney L, Jenkins A, Kelly C, Pullen K: Promoting consumer participation in mental health research: A national workshop. Centre for Mental Health Research Publish with Bio Med Central and every 2004 [http://www.anu.edu.au/cmhr/pdf/consumerworkshopre scientist can read your work free of charge port.pdf]. The Australian National University accessed 2nd May 2007 15. Education and Training for Consumer Participation in health "BioMed Central will be the most significant development for care: final report of project, Global Learning Services, 2000 disseminating the results of biomedical researc h in our lifetime." [http://www.participateinhealth.org.au/clearinghouse/Docs/cfcedan Sir Paul Nurse, Cancer Research UK dtrainreport.pdf]. National Resource Centre for Consumer Participa- tion in Health accessed 2nd May 2007 Your research papers will be: 16. Consumer Representatives Program 2003 Consumers' Health available free of charge to the entire biomedical community Forum of Australia [http://www.chf.org.au/consumer_reps_program/ about_rep_program.asp]. accessed 2nd May 2007 peer reviewed and published immediately upon acceptance 17. National Health and Medical Research Council (NHMRC)/Consum- cited in PubMed and archived on PubMed Central ers' Health Forum of Australia: A Model Framework for Con- sumer and Community Participation in Health and Medical yours — you keep the copyright Research. Commonwealth of Australia 2004 [http:// BioMedcentral www.nhmrc.gov.au]. accessed 2nd May 2007 Submit your manuscript here: http://www.biomedcentral.com/info/publishing_adv.asp Page 6 of 6 (page number not for citation purposes) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Australia and New Zealand Health Policy Springer Journals

Operationalising a model framework for consumer and community participation in health and medical research

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Publisher
Springer Journals
Copyright
Copyright © 2007 by Saunders et al; licensee BioMed Central Ltd.
Subject
Medicine & Public Health; Public Health; Social Policy
ISSN
1743-8462
eISSN
1743-8462
DOI
10.1186/1743-8462-4-13
pmid
17592651
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Abstract

The Consumers' Health Forum of Australia and the National Health and Medical Research Council has recently developed a Model Framework for Consumer and Community Participation in Health and Medical Research in order to better align health and medical research with community need, and improve the impact of research. Model frameworks may have little impact on what goes on in practice unless relevant organisations actively make use of them. Philanthropic and government bodies have reported involving consumers in more meaningful or collaborative ways of late. This paper describes how a large charity organisation, which funds a significant proportion of Australian cancer research, operationalised the model framework using a unique approach demonstrating that it is both possible and reasonable for research to be considerate of public values. care, and rapid technological advances in diagnostic, clin- Background The National Health and Medical Research Council ical practice and treatment options[3]. (NHMRC) is Australia's national independent agency responsible for the overall development of research strat- Actively seeking the views of consumers regarding health egy and the allocation of the vast majority of health and research is now recognised as an opportunity to access val- medical research funding [1]. Recently the NHMRC uable untapped knowledge, and a means of improving announced that it would make changes to its funding the relevance and translation of research into practice and processes in order to better align health and medical of making research organisations more accountable [4,5]. research with community need, and improve the impact Consumer perspectives trigger consideration for the wider of research [2]. A commitment such as this signifies an environmental, psychosocial, and behavioural contexts of important culture shift toward greater public involvement people's lives [6]. Further reported benefits include a in health research. This shift is brought about by a range greater acceptance and uptake of research findings in the of factors including demands from an increasingly edu- community, and more efficient use of research resources cated and aging population in growing need of health [7,8]. Page 1 of 6 (page number not for citation purposes) Australia and New Zealand Health Policy 2007, 4:13 http://www.anzhealthpolicy.com/content/4/1/13 Approaches to genuine consumer participation in health This paper describes how a large charity organisation, research are evolving. Past approaches were based on a which funds a significant proportion of Australian cancer false separation of expert from lay person with corre- research, operationalised the model framework using a sponding activity tending to place the parties in active and unique approach. reactive roles. Consumers were traditionally involved in symbolic or passive ways, such as sitting on research com- The Cancer Council NSW Consumer Involvement in Research Project mittees, as research subjects, or as fundraisers for research dollars [9]. Recently, philanthropic and government bod- Influencing the direction of research into the causes, pre- ies have both reported involving consumers in more vention, optimal treatments and support for cancer suffer- meaningful or collaborative ways including recognising ers is a major goal of a number of Australian cancer research opportunities through participation in research consumer advocacy groups who believe that consumers agenda setting meetings and workshops, to identifying can add significant value to research through their active research needs, evaluating research hypotheses, commu- participation [18,19]. The Cancer Council NSW nicating results and supporting the incorporation of (CCNSW) believes it is very important that consumers appropriate research findings into practice [9-11]. Often, and the wider public value its research, which is princi- more than one participation strategy is reported [9]. pally financed through charitable donations. Consumers have always been involved, to varying degrees, across a Consumers face particular challenges when they become range of CCNSW research processes, however it was felt involved in health research. Some of the barriers experi- that important opportunities existed for improvements in enced include lack of confidence in their decision-making this area. Collaboration between the peak NSW cancer ability in relation to research and a lack of understanding advocacy organisation, Cancer Voices NSW (CVN) and and education about research and research governance. the Cancer Council NSW, led to an approach that would Neglecting to involve consumers in research has previ- allow consumers genuine input into the allocation of ously led to adverse patient outcomes either as a direct funding for CCNSW research including the establishment result of poorly designed or implemented research or as a of a dedicated consumer review panel and specific con- result of absent or poor communication of research out- sumer review criteria. comes [12,13]. Goodare and Chalmers provide convinc- ing arguments for improved levels of consumer The specific aims of the Consumer Involvement in Research involvement through descriptions of 'real life' conse- Project were to: quences of overlooking consumers in research processes [12,13]. • Assess consumers', non-commercial financial donors' and the public's views on what they value as important in A model participation framework deciding what research should be funded. In Australia the importance of consumer participation in research has been recognised in a number of reports and � Develop a set of criteria suitable for use by cancer con- initiatives [14-16]. In partnership with Australia's peak sumers and members of the public to rate research appli- independent organisation representing consumers on cations submitted to CCNSW for funding. national health care issues, the Consumers' Health Forum of Australia (CHF), the NHMRC has recently developed a � Identify the type of training that may be required to model framework for Consumer and Community Partici- assist consumers to participate in the research grant review pation in Health and Medical Research [17]. The existence process. of a model framework in any field recognises the impor- tance of that field, and is often evidence of seminal think- � Establish a consumer panel whose trained members ing in itself. At a minimum, the framework is intended as would effectively review, apply specific criteria and give a a resource to provide advice and practical information to ranking to CCNSW research grant applications. support and promote consumer participation in research in Australia. To be helpful, a framework generally has to � Identify suitable research governance arrangements that be relevant to practice and adaptable to local structures, formally incorporate public values in research funding environments and needs. The application of any model decisions. framework is subject to operational realities and con- Aligning the Consumer Involvement in Research Project straints. In addition, frameworks may make little impact on what goes on in practice unless relevant organisations with the model framework actively make use of them. A model framework is by its The CCNSW project will be described in relation to each very nature an evolving entity that can be extended and of the four fundamental components of the NHMRC/ improved over time. CHF model framework. The four components are consid- Page 2 of 6 (page number not for citation purposes) Australia and New Zealand Health Policy 2007, 4:13 http://www.anzhealthpolicy.com/content/4/1/13 ered essential for successful consumer involvement in sumer involvement in the CCNSW review process. In the research. past, CCNSW research funding decisions were based solely on scientific merit criteria that fundamentally esti- Model framework: Key component 1 mate the potential success of research through an assess- Both senior leadership and operational capacity will underpin ment of scientific quality and the ability of the success in developing consumer and community participation in investigator to conduct the research. A number of national research. Whilst all researchers have a part to play in develop- specialty committees covering a range of research disci- ing consumer participation, it is helpful to have a designated plines assigned numeric ratings to the relevant funding person who is responsible for ensuring progress at an organisa- applications. Consumers were not involved in the review tional level and who can facilitate the attempts of researchers of CCNSW research grant applications against scientific and consumers to work together. merit criteria. As public accountability inevitably requires research funds to be properly administered to those with In mid 2004 the CCNSW Board of Directors, considering the highest likelihood of success, it was necessary to main- a proposal put forward by the Chair of Cancer Voices tain the integrity of the scientific review process. NSW and recognising the value of consumer participation in the direction and process of research, affirmed the Can- It was agreed by all parties that the review of research cer Council's commitment to this issue by endorsing an grants would involve a two-stage assessment process with investigation into a workable organisational solution, a difference existing in the membership of the two layers including any associated structural and process changes, of committee structures. The two tiered structure, which to involve consumers in the research grant review process. allows the CCNSW to strike a balance between funding A senior staff member, who was assigned initial responsi- research of significant scientific merit, and research judged bility for development of the concept, saw the initiative especially relevant by consumers is provided in Table 1. It through to completion and continues to provide advice is a workable structure for CCNSW because the demand regarding changes and enhancements to the consumer for research funding consistently exceeds the supply of review process. For the most part, this staff member CCNSW funds and choices have to be made, even assumed day-to-day responsibility for the progression of amongst applications that have significant scientific the project, made sure all decisions considered the needs merit. of relevant parties who would be affected by required changes and was to all intents and purposes confined to Rather than scientists and consumers collectively deciding this one project. According to the complexity theory [20], on funding outcomes based on scientific merit, an inde- placing a large number of people on a single project cre- pendent consumer structure and the identified public ates more interplay than progress. value measures would allow consumers the opportunity to weight research applications based on criteria relevant Supporting structures such as a project advisory commit- to them. Far from requiring significant organisational tee and research team, both of which included informed change and being inherently complicated, the strength of consumer representatives, were established to guide the the selected approach i.e. the creation of a secondary necessary changes to support the consumer review of review process, allowed existing structures to remain, research grant applications including advising the devel- while fully supporting consumer choices. opment of necessary tools, guidelines, education materi- als and evaluation and reporting procedures. A separate It was acknowledged that researchers, by nature of being research team led an investigation to identify the values human, create and maintain particular norms, values and deemed by consumers and the public to be important in culture within their area of influence. It was found that an guiding lay people in objectively judging the value and independent consumer structure in which consumers merit of different research. The prevailing public and con- were able to openly contribute to discussions and negoti- sumer needs were to become the 'consumer review' crite- ations amongst consumer peers had a more informal and ria within a formal appraisal tool to guide lay people in unrestricted atmosphere. Consumers, rather than feeling objectively judging the value of different research. they are required to follow the lead and opinions of researchers, now have an objective say in the research ulti- Model framework: Key component 2 mately funded by the CCNSW. It also means that there is Building consumer and community participation into the struc- no expectation that consumers should develop any tures of research funding bodies, organisations and teams will sophisticated expertise in scientific review criteria such as strengthen and support its implementation. research design, methodologies or analyses. Their 'exper- tise' is their ability to provide an informed consumer per- Existing administrative and cultural characteristics were spective to the decision-making process. CCNSW key considerations in the development and fit of con- commitment to consumer participation in research review Page 3 of 6 (page number not for citation purposes) Australia and New Zealand Health Policy 2007, 4:13 http://www.anzhealthpolicy.com/content/4/1/13 Table 1: The Cancer Council NSW grant review process Step 1: National Health and Medical Research Council (NHMRC) review Applicants for research grants must demonstrate that the research has the relevant approval (eg human ethics, animal ethics, bio-safety) from a recognised research ethics committee before a grant is funded. Specialty research committees review research grant applications based on scientific merit criteria and give a rating and ranking to eligible applications which are then forwarded to CCNSW for a further assessment against consumer review criteria. Step 2: Consumer review A trained Consumer Review Panel assesses the eligible funding applications (pre-selected through the scientific review process) based on consumer review criteria and assigns a separate 'public value' weighting to each. An overall priority ranking for the applications is developed identifying those that best satisfy the consumer review criteria. Step 3: Cancer Research Committee recommendations The Cancer Council's Cancer Research Committee (CRC) formally reviews funding applications that have been assigned a priority ranking against both scientific merit and consumer review criteria, and makes final funding recommendations to the CCNSW board. In making their funding recommendations, the CRC gives the rankings from each group equal weighting and assesses any major discrepancies between consumer and scientific review to ensure that the final list of fundable projects is the most appropriate. was built within the existing review framework while pro- The commitment and ongoing support of key consumers, viding an important level of consumer autonomy. particularly the time and opportunity costs, also need to be factored into an assessment of the resources required to Model framework: Key component 3 successfully undertake a project of this nature. Formally Resources are needed to help consumer and community partic- registering as volunteers of the CCNSW, consumers have ipation to work well. been significantly involved over many months in the gen- esis, conduct and promotion of this initiative. The active, The costs and benefits of consumer involvement must be enthusiastic involvement of this group continues unwa- identified. Once the project strategies were agreed, a vering today. While the CCNSW volunteer reimburse- detailed written plan was developed, including defining ment policy provides for full compensation for all out of the work requirements, establishing a division of respon- pocket expenses incurred as a result of volunteering for sibilities, and quantifying the types and numbers of the CCNSW such as phone calls, motor vehicle expenses, resources required, such as staff time requirements. This parking, child care etc, volunteers offer their valued serv- approach ensured that all project activities and necessary ices willingly with no expectation of any additional pay- resources were properly defined. The more tangible ment. resources used in the project such as the research contract Model framework: Key component 4 with our university partner, training manuals, mailouts and other administrative costs etc were easily identified Developing and sustaining consumer and community participa- and represented known costs to the organisation. Labour tion requires changes to structures and attitudes, which take costs were more difficult to quantify and initial assump- time and commitment. tions under-estimated the actual outlay in this area. It was recognised that effective consumer participation in Organised consumer review of research relies on the com- research requires adequate support, knowledge, skills and mitment of a range of staff right across the organisation. resources for both consumers and researchers. A core Staff responsibilities include the coordination, training expectation of consumer participation is that they will and management of the consumer review panel, and com- wish to participate. The independent consumer panel municating processes, progress and problems to research- charged with reviewing research applications was estab- ers, CCNSW Board and management. Staff also have lished through a voluntary 'opt in' and formal assessment responsibility to support the practical needs of consumer basis. To minimise the effect of real-world factors such as panel members, serve as resource persons throughout the differing levels of experience and expertise among poten- review process, review training program and manual con- tial members, applicants were purposefully selected based tents, and consider ways to continually improve the con- on a number of aspects. These included whether they had sumer involvement procedures and systems. an interest in cancer research, a willingness to familiarise Page 4 of 6 (page number not for citation purposes) Australia and New Zealand Health Policy 2007, 4:13 http://www.anzhealthpolicy.com/content/4/1/13 self with research terminology, disciplines and concepts, the wider community. Factors that were found to be very experience in consumer centred cancer groups and organ- important to consumers include the level of positive isations, and the ability to keep up to date with current impact on human lives, whether the research could be consumer issues via consumer networks and associations. applied in the real world and if it would be available to all who could benefit by it, how soon the research was likely There was also a need to develop consumer panels in ways to be available in clinical practice, and whether consumers that created an ongoing commitment to organisational were involved. Training and information in the under- goals. This was achieved through the development of for- standing and use of the review criteria is provided to con- mal terms of reference, comprehensive review guidelines sumers and researchers. The first year of the consumer and the provision of adequate training and information. review process led to the funding of three out of twelve To prepare consumers to review research funding applica- applications that would not have been previously consid- tions, all necessary knowledge and skills, topics, tasks, and ered, but which better served the needs of the community. assessment requirements were identified and developed into a comprehensive annual 2-day training workshop, It has taken over two years of planning, researching, test- which is mandatory for all consumer review panel mem- ing and retesting to reach the current level of consumer bers. The aim of the training, which is based on general involvement in research review at the CCNSW. adult learning principles, is to ensure that participants: Limitations � Understand CCNSW research mission and its extramu- While the Consumer Involvement in Research Project success- ral research activities; fully involves consumers in a responsive research funding grant program, it may not be applicable to commissioned � Are familiar with key research concepts and terminology research initiatives aimed expressly at meeting identified required to participate in the consumer review process; research and development priorities. � Understand the consumer panel member role and Conclusion responsibilities for participation in the consumer review Relatively unstructured consumer involvement in research can take a great deal of time and effort to examine process. and sort for valuable insights, and often does not develop A training manual with a large variety of printed materials into a tangible product that readily identifies both the has also been developed to supplement the training and process and outcomes of consumer involvement. The provide a ready reference of essential information to assist NHMRC/CHF model framework provides practical advice consumers in undertaking research review. on structure using four key components that are consid- ered necessary for effective consumer involvement in In addition to the training requirements, consumer panel research. The CCNSW initiative provides a clear example members suggested that the review of research grant sub- against the four key components of the model for one par- missions would be made easier if they were provided a ticular initiative, namely research funding review. We consumer friendly abstract explaining the scientific basis believe this example is a valuable addition to the steadily of each application in laymen's terms. This is now a increasing number of soundly grounded mechanisms for requirement of all CCNSW research project grant applica- consumer involvement in research. tions. Information, including examples of well-developed lay summaries is included in the initial funding applica- It has been reported that models for engaging consumers tion form. Researchers are informed that it is in their best must look ahead and contribute to long term goals, they interest to provide adequate detail in the lay summary, as must aim to deliver desired changes in the real world, be consumers are not expected to have a science or research fair and take account all interests and not be afraid of background or to fully read (or necessarily understand), experimentation [21]. The CCNSW consumer review the original research applications. To their credit the process is a long-term solution to issues where consumers majority of researchers who have applied for CCNSW and researchers begin at disparate levels and have differ- funds in the past two years have readily responded to the ent priorities. The project originated in partnership with different needs of consumers. consumers and has required considerable conceptual, financial, human and infrastructure resources. It places The consumer review criteria, which were designed to consumer participation within a workable, respectful and assist the consumer panel members to judge research pro- lasting structure. Consumer involvement in research posals for funding, were developed and established over funding review at the CCNSW is now a committed, sys- nine months of research [22] to determine what aspects of temic practice underpinned by prevailing public values. It research were important to those affected by cancer and to Page 5 of 6 (page number not for citation purposes) Australia and New Zealand Health Policy 2007, 4:13 http://www.anzhealthpolicy.com/content/4/1/13 18. Cancer Voices NSW [http://www.cancervoices.org.au/]. accessed is a model that is eminently translatable by other research 2nd May 2007 funding organisations. 19. Breast Cancer Action Group NSW [http:// www.bcagnsw.org.au/index.html]. accessed 2nd May 2007 20. The ePMbook [http://www.epmbook.com/index.html]. accessed Acknowledgements 2nd May 2007 This project was undertaken under the auspices of The Cancer Council 21. 3rd National Health Policy Roundtable: Engaging Consum- New South Wales' Centre for Health Research & Psycho-oncology ers In Health Policy: Assessing Models & Options 2005 [http:/ (CHeRP), with funding from The Cancer Council NSW and infrastructure /www.aihps.org/component/option,com_docman/task,doc_view/ gid,33/Itemid,86/ support from the Hunter Medical Research Institute. Cancer Voices NSW, #search=%22model%20framework%20for%20consumer%20and%20 the peak independent cancer consumer advocacy organisation in New commu nity%20participation%22]. The Australian Institute of Health South Wales, Australia, was instrumental in the genesis of project and, Policy Studies (AIHPS) accessed 2nd May 2007 through its Chair, Sally Crossing, was also actively involved in the conduct 22. Saunders C, Girgis A, Butow P, Crossing S, Penman A: Beyond Sci- entific Rigour – funding cancer research of public value. and promotion of the project. Health Policy Journal (UK) in press. References 1. National Health and Medical Research Council Amendment Bill 2006: Commonwealth of Australia 2006 [http://www.aph.gov.au/Library/Pubs/ nd bd/2005-06/06bd126.htm]. Parliamentary Library accessed 2 May 2. Accelerating the Pace of Health and Medical Research: [http:// www.nhmrc.gov.au/news/media/rel05/acelresearch.htm]. accessed nd 2 May 2007 3. Opening Address to the 2nd International Conference On Healthy Ageing and Longevity The Minister for Ageing, The Hon Julie Bishop MP 2005 [http://www.health.gov.au/internet/ministers/ publishing.nsf/Content/health-mediarel-yr2005-jb- bissp180305.htm?OpenDocument&yr=2005&mth=3]. accessed 2nd May 2007 4. Tallon D: Consumer involvement in research is essential. BMJ 2000, 320:380. 5. Congressionally Directed Medical Research Programs: Consumer Involvement [http://cdmrp.army.mil/cwg/default.htm]. accessed 2nd May 2007 6. Minogue V, Boness J, Brown A, Girdlestone J: The impact of serv- ice user involvement in research. Int J Health Care Qual Assur Inc Leadersh Health Serv 2005, 18(2–3):103-12. 7. Entwistle VA, Renfrew MJ, Yearly S, Forrester J, Lamont T: Why involve consumers in research? Lay perspectives: advantages for health research. BMJ 1998, 316:463-466. 8. Smith R: What Information I would want as a patient (and what I'd get in Britain) 2003. [http://resources.bmj.com/bmj/ nd interactive/talks]. accessed May 2 2007. 9. Maslin-Prothero S: Developing user involvement in research. Journal of Clinical Nursing 2003, 12(3):412-421. 10. National Health and Medical Research Council (NHMRC): Sum- mary Statement on Consumer and Community Participa- tion in Health and Medical Research. Commonwealth of Australia 11. Boote J, Telford R, Cooper C: Consumer involvement in health research: a review and research agenda. Health Policy 2002, 61:2133-236. 12. Goodare H, Smith R: The rights of patients in research. BMJ 1995, 310:1277-1278. 13. Chalmers I: What do I want from health research and researchers when I am a patient? BMJ 1995, 310:1315-8. 14. Griffiths K, Christensen H, Barney L, Jenkins A, Kelly C, Pullen K: Promoting consumer participation in mental health research: A national workshop. Centre for Mental Health Research Publish with Bio Med Central and every 2004 [http://www.anu.edu.au/cmhr/pdf/consumerworkshopre scientist can read your work free of charge port.pdf]. The Australian National University accessed 2nd May 2007 15. Education and Training for Consumer Participation in health "BioMed Central will be the most significant development for care: final report of project, Global Learning Services, 2000 disseminating the results of biomedical researc h in our lifetime." [http://www.participateinhealth.org.au/clearinghouse/Docs/cfcedan Sir Paul Nurse, Cancer Research UK dtrainreport.pdf]. National Resource Centre for Consumer Participa- tion in Health accessed 2nd May 2007 Your research papers will be: 16. Consumer Representatives Program 2003 Consumers' Health available free of charge to the entire biomedical community Forum of Australia [http://www.chf.org.au/consumer_reps_program/ about_rep_program.asp]. accessed 2nd May 2007 peer reviewed and published immediately upon acceptance 17. National Health and Medical Research Council (NHMRC)/Consum- cited in PubMed and archived on PubMed Central ers' Health Forum of Australia: A Model Framework for Con- sumer and Community Participation in Health and Medical yours — you keep the copyright Research. Commonwealth of Australia 2004 [http:// BioMedcentral www.nhmrc.gov.au]. accessed 2nd May 2007 Submit your manuscript here: http://www.biomedcentral.com/info/publishing_adv.asp Page 6 of 6 (page number not for citation purposes)

Journal

Australia and New Zealand Health PolicySpringer Journals

Published: Jun 26, 2007

References