ANZMUSC 2015 Inaugural Summit

Day 1

Tuesday, 21 April 2015

8:00am – 9:00amRegistration, tea and coffeeFoyer
9:00am – 9:20amWelcome and introductions Why do we need ANZMUSC? Chair and Official Opening: Professor Rachelle Buchbinder (5 min) Director, Monash Dept Clinical epidemiology Cabrini Institute and Monash University Mr Tony Kingdon (15 min) Acting CEO, NHMRC The NHMRC Perspective on Clinical Trial NetworksLecture theatre
9:20am – 10:30am  Professor Alan Silman (15 min) Professor of Musculoskeletal Health, University of Oxford; former Medical Director Arthritis Research UK ANZMUSC Clinical Trial Network: The value proposition Professor John Zalcberg (15 min)Chair, Australian Clinical Trials Alliance Investigator-Initiated Clinical Trials Networks: The quality agendaProfessor Rachelle Buchbinder (15 min) Director, Monash Dept Clinical Epidemiology Cabrini Institute and Monash University The problem: Burden of musculoskeletal disease and current state of MSK trials Dr Sam Whittle (15 min) Consultant rheumatologist, The Queen Elizabeth Hospital Results of the ANZMUSC Survey Discussion (10 min)Lecture theatre
10:30am – 11:00amMorning TeaFoyer
11:00am – 12:35pm  Clinical trial network models Chair: Ian Harris Professor of Orthopedic Surgery, UNSW Professor Alan Silman (20 mins) Professor of Musculoskeletal Health, University of Oxford; former Medical Director Arthritis Research UK Bottom up versus top down models Professor John Zalcberg (20 mins) Chair, Australian Clinical Trials Alliance Different models and their governance Clinical Associate Professor Craig French (20 mins) Vice Chair, Australian & New Zealand Intensive Care Society Clinical Trials Group (ANZICS) ANZICS: Set up, funding, priorities, successes and challenges Ms Rhiannon Tate (20 mins) Executive Officer, Australian Clinical Trials Alliance How do other Australasian trials network do it? Results of the ACTA survey Discussion (15 minutes)Lecture theatre
12:35pm – 12:45pmProfessor Jane Latimer (10 mins) Principal Research Fellow, Musculoskeletal Division, The George Institute for Global Health Instructions for Breakout Session 1Lecture theatre
12:45pm – 1:30pmLunchFoyer
1:30pm – 2:45pmBreakout Session 1: ANZMUSC: Vision, Mission and Scope, Values and Structure  Breakout rooms
2:45pm – 3:30pmBreakout Session 1: report back and Discussion   Facilitators: Professor Alan Silman, John ZalcbergLecture theatre
3:30pm – 4:00pmAfternoon TeaFoyer
4:00pm – 5:00pmConsumers and policy makers Chair: Professor Chris Maher Head Musculoskeletal Division, The George Institute for Global Health Ms Ainslie Cahill (15 min) Chief Executive Officer, Arthritis Australia What can consumers contribute? Associate Professor Alex Collie (15 min) Chief Executive Officer, ISCRR, Institute for Safety, Compensation and Recovery Research How do you build relationships with policy makers? Ms Amanda Mulcahy (15 min) Senior Program Officer, Implementation Support, Australian Commission on Safety And Quality in Health Care Variations in care and opportunities for clinical trials to address them Discussion (10 min)Lecture theatre
Sum up of the day Professor Ian Harris (5min) Professor of Orthopaedic Surgery, UNSWLecture Theatre
7:00pm – 10:00pmSummit DinnerThe Essoign Club: 1/205 William Street, Melbourne

Day 2

Wednesday, 22 April 2015

9:00am – 9:45amEmbedding research in clinical care Chair: Professor Chris Maher Head Musculoskeletal Division, The George Institute for global Health Associate Professor Meredith Temple-Smith (20 min) Academic Lead, Australian Primary Care Research Network (APCReN) Getting clinicians ‘research ready’ Ms Linda Martin (15 min) Chief Executive Officer, Arthritis & Osteoporosis Victoria Getting consumers ‘research ready’ Discussion (10 min)Lecture theatre
9:45am – 10:30amGetting funded Professor Alan Silman (20 min) Professor of Musculoskeletal Health, University of Oxford; former Medical Director Arthritis Research UK  What would it take to establish ANZMUSC? Professor John Zalcberg (10 min) Chair, Australian Clinical Trials Alliance Funding clinical trial networks in Australia and New Zealand Discussion (15 min)Lecture theatre
10:30am – 11:00amMorning TeaFoyer
11.00am – 12:05pmANZCA, AGIGT, PREDICT and UK Experience Chair: Professor Lisa Stamp Rheumatologist and Professor of Medicine, University of Otago, Christchurch, New Zealand Professor John Zalcberg (15 min) Chair, Australian Clinical Trials Alliance AGITG: Set up, funding, priorities, successes and challenges Professor Paul Myles (15 min)Founding member, Australian and New Zealand College of Anaesthetists (ANZCA) Trials Group ANZCA: Set up, funding, priorities, successes and challenges Associate Professor Ed Oakley (15 min) Victorian Paediatrician Clinical Network (PREDICT) PREDICT; Set up, funding, priorities, successes and challenges Professor Alan Silman (15 min) Professor of Musculoskeletal Health, University of Oxford; former Medical Director Arthritis Research UK The UK experience: Set up, priorities, challenges and outcomesLecture Theatre
12:05pm – 12:30pmGetting Started Professor Alan Silman (15 min) Professor of Musculoskeletal Health, University of Oxford; former Medical Director Arthritis Research UK Planning the next steps Professor Ian Harris (10min) Professor of Orthopedic Surgery, UNSW Instructions for Breakout Session 2Lecture theatre
12:30pm – 1:15pmLunchFoyer
1:15pm – 2:30pmBreakout Session 2: Initial goals and how they can be achieved?  Breakout Rooms
2:30pm – 3:30pmBreakout Session 2: Report back and discussion Facilitators: Professors Alan Silman and John Zalcberg Lecture theatre
3:30pm – 4:00pmAfternoon TeaFoyer
4:00pm – 5:00pmNext steps Facilitators: Professors John Zalcberg and Alan Silman Final summation, key points and next stepsSum up Professor Chris Maher Head Musculoskeletal Division, The George Institute for global HealthLecture theatre

21-22 April 2015, AMREP Education Centre, Alfred Medical Research and Education Precinct, Alfred Hospital, Melbourne

 Generously supported by Arthritis Australia, Arthritis and Osteoporosis Victoria, Arthritis South Australia, Arthritis and Osteoporosis Tasmania, Australian Rheumatology Association, Australian Orthopaedic Association, Australian Physiotherapy Association, Cabrini Institute and Monash University Goals of the SummitThere were four goals of the summit.

  1. To bring together all stakeholders with an interest in investigator-initiated musculoskeletal clinical trials to garner support for an international, multidisciplinary, collaborative musculoskeletal clinical trials network;
  2. To develop an agreed vision and mission statement and a set of values for ANZMUSC;
  3. To clearly identify achievable goals for the next year; and
  4. To develop a plan for how these goals will be realised.

 Attendees at the Summit  There were 100 participants at the Summit. Participants were affiliated with 22 Universities in Australia and New Zealand as well as various research institutes and hospitals, consumer organisations, professional societies, NHMRC, Departments of Health (NSW, WA), Australian Commission on Safety & Quality in Health Care, Australian Clinical Trials Alliance (ACTA) and health insurers (Medibank Private). This suggests that our first goal was achieved.Facilitators Professors Alan Silman (UK) and John Zalcberg OAM (VIC) facilitated the two-day summit. Professor Silman is an epidemiologist and a rheumatologist. He was Director of the UK’s Arthritis Research Epidemiology Unit in Manchester from 1988-2006. He then became Arthritis Research UK’s first Medical Director, a post he held from 2007 until the end of 2014. Currently he is Professor of Musculoskeletal Health in the Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Disease at Oxford University. Professor John Zalcberg OAM was the Director, Division of Cancer Medicine, at the Peter MacCallum Cancer Centre in Melbourne, Australia for 17 years prior to recently taking up the position of Head, Cancer Research Program in the School of Public Health and Preventative Medicine at Monash University. He is a founding member of the Australasian Gastrointestinal Trials Group (AGITG) and is immediate past Chair of The Board after serving in this role for over 15 years. He is the Interim Chair of the Australian Clinical Trials Alliance (ACTA), an organization that is involved in advocating for embedding clinical research into routine clinical practice in order to improve the quality of health care delivery. Program The program comprised a mix of talks and small group break out and feedback sessions. Over the two days we considered the value proposition of a network and how this is likely to greatly enhance our ability to perform large high quality multicentre studies focused on addressing the most important clinical questions. We heard about the outstanding achievements of other Australia and New Zealand clinical trial networks and the views of consumer and policy maker representatives. We presented the results of a survey that obtained the views of Australia and New Zealand musculoskeletal trialists and invited discussion in two small group breakout sessions and several feedback sessions devoted to considering the vision, mission, scope, values and structure of ANZMUSC, and the initial goals and how these can be achieved.Summary of Invited Presentations: Day 1 (Tuesday April 21st)In the first session on Day 1Mr Tony Kingdon, Acting Chief Executive Officer, NHMRCoutlined the NHMRC’s strong support for investigator-initiated clinical trials. The Clinical Trial Action Group (CTAG) report (2011) recommended that greater support for clinical trials networks in priority health areas be provided through the NHMRC. He outlined the steps that have been taken towards this goal, including identification of networks that exist in Australia and facilitating national coordination and encouraging collaboration across academia, clinical medicine and industry. The NHMRC are working with ACTA to better understand Australia’s Clinical Trials Networks and their contributions to the health system. In addition they have initiated strategies to improve staff training such as website resources (see and development of competencies and are working towards a nationally consistent approach to clinical trials through redevelopment of the Ethics Application Form; pilot Clinical Trial web portal; and ‘good practice’ site assessment and authorisation of clinical trials. Professor Alan Silman presented the value proposition of the ANZMUSC Clinical Trials Network. He outlined three major shortages – funding, clinical trial expertise and patients. He described the importance of determining the best clinical question in terms of which patients (e.g. severity, sub type, demographics, previous therapy), what intervention (e.g. dose, duration, comparator and co-therapies) and what outcomes (e.g. which measures, time point and consideration of ability to detect important between-group differences). He outlined the many barriers to performing trials that answered the important questions.  Professor John Zalcberg presented the quality agenda of investigator-initiated clinical trial networks. He emphasised that investigator-led networks are the most effective mechanism to undertake important public-good research. They can provide evidence that guides decision-making by clinicians, patients and policymakers, lead to improved health outcomes or cost savings, or both, and are integral to improving the quality of the healthcare system. Local networks not only add to the evidence base, they can change practice outside of clinical trials, address local patterns of care, increase accessibility to new agents and improve outcomes for patients involved in research. The strengths of a network include the extensive access to expertise and corporate knowledge that is generated, access to large pool of patients for large trials, and the creation of infrastructure as well as a culture of research. Networks are typically run by clinicians who understand what is relevant to clinicians. They are responsible to, and representative of members, and can act to mentor and train the next generation, develop effective partnerships with similar international networks and facilitate the translation of research into practice by generating a community of clinicians who have a strong interest in the trials’ results. Australia has about 35 established national clinical trials networks in Australia including 13 collaborative cancer groups. These networks are global leaders across many disciplines and have produced numerous examples of high-impact trials that have changed practice, improved outcomes and saved money. The Australian Clinical Trials Alliance (ACTA) ( is promoting effective and cost‐effective health care in Australia through investigator‐initiated clinical trials. It has written a white paper that estimates the health and economic returns of investing in public-good clinical trials and clinical quality registries. Professor Rachelle Buchbinder outlined the global burden of musculoskeletal disease, which accounts for 6.8% of the total burden of disease (including both death and disability). In Australia, musculoskeletal conditions have the second greatest impact on the health of the population after cancer (15.3% vs 16.2% of overall disease burden). Low back pain contributes most to years lived with disability, followed by major depressive disorder, other musculoskeletal, neck pain and falls, with osteoarthritis ranked 11th. In New Zealand low back pain also contributes most to years lived with disability, followed by major depressive disorder, neck pain, anxiety disorders and falls, with osteoarthritis also ranked 11th. She summarised the results of a scoping review, undertaken at the end of 2013 that determined the current state of musculoskeletal trials in Australia. For the five-year interval 2009 to 2013, NHMRC funded 29 musculoskeletal randomised controlled trials at a cost of $17,612,303 (~ 5.8 per year). This represents ~1% of all project grants and project grant funding for those five years (3,631 grants, total funding $2,076,132,819) and 4.9% of all NHMRC clinical trial funding (total funding $354,394,863). Only one program grant for musculoskeletal conditions was funded over the same period (>$7m funding) from which 8 trials are registered and/or planned. 128 Australian-initiated randomised controlled trials were registered in a clinical trials registry in 2011 or 12. In two-thirds of these the sample size was less than 100. Of 565 investigator-initiated randomised controlled trials published in 37 leading journals in 2011 or 2012, 30 (or 1 in 20) were Australian investigator-initiated trials. While the scoping review demonstrated that Australian musculoskeletal trialists are productive and internationally competitive, current funding is suboptimal and starkly disproportionate with the MSK global burden. In addition, current trials are small and may not be focused upon the most important clinical questions. She suggested that a collaborative network might be the only viable and sustainable model to address these shortcomings. A network is able to facilitate funding and resource acquisition, facilitate the conduct of trials, create and manage the network brand and create a culture. The ANZMUSC Clinical Trials Network could transform the current ad hoc approach to Australian musculoskeletal clinical trials and formulate a national research agenda and funding plan that would focus on most critical gaps in evidence and gaps between evidence and practice. Finally, Dr Sam Whittle presented the results of the ANZMUSC clinical trialist Internet survey. Invitations were sent to 243 clinical trialists and 112 completed the survey (response rate 46%). Respondents were from all states and territories other than Northern Territory in Australia and 15% were from New Zealand. A wide variety of disciplines were represented with the largest group being physiotherapists. There were a wide variety of interests and also a diversity of opinions regarding how priorities for trials should be established. Most respondents (107/112) were either interested in ANZMUSC membership or were as yet undecided. Respondents indicated a wide variety of potential benefits of ANZMUSC membership which could be summarised into six themes: collaboration/networking; funding; learning/gaining experience/peer review; priority setting; advocacy for musculoskeletal disease/research; and avoidance of duplication.   In the second session on Day 1, Professor Silman discussed top down versus bottom up network models and Professor Zalcberg discussed different types of network models.  Networks can be sub-entities of a parent body or an independent legal entity. Networks that are part of a professional society or other body cannot receive funds in own name and are ultimately responsible to the parent body. There may be greater support, lower costs and greater reach, compared with independent entities, but this may be at the expense of reduced independence and autonomy. Sub-entities of parent bodies are the most common structure for non-cancer networks. Independent legal entities are most commonly an incorporated public company or association. They have a Board of Directors and report to ASIC/ACNC (registered charities & not-for-profits). They are ultimately responsible to their members. They can receive funds in own name and have fiduciary responsibilities. While they have greater independence and autonomy, they may have less support, greater costs and variable reach. Most cancer networks are independent legal entities. There are many governance issues that will need to be resolved. This includes ownership of the network; defining an agreed vision, mission, values and aims; transparency of rules and terms of reference; representation of members and an understanding that the Group is for the members not about the executive or the Chair; responsibility to members; turnover of leadership; executive office / administration; regular meetings; and communication. In the early stages it is often heavily reliant on a Chair + Executive Officer. Special Interest Groups and/or Working Groups can facilitate stakeholder engagement, diversify expertise and share workload. Other considerations that will require thought include trial management (central or devolved), identifying questions, designing trials, peer review, endorsing trials, whether or not we will sponsor trials, coordinating or running trials, investigator-initiated +/- industry trials; fundraising, and training, mentoring and education. It should also consider the opportunity to meet face to face at least once a year, selection of principal investigators, day-to-day management of the group, succession planning and engagement of all professional sub-disciplines. The first in a series of talks showcasing the outstanding achievements of other Australia and New Zealand clinical trial networks was given by Associate Professor Craig FrenchVice-Chair of the Vice Chair, Australian & New Zealand Intensive Care Society Clinical Trials Group (ANZICS). The ANZICs group was formed in 1994. Early studies built the network, infrastructure and track record and were largely unfunded. The principal investigators did much of the work and there was no formal management committee. There are now 73 ICU members of ANZICS and between them they have enrolled more than 30,000 patients in observational studies and more than 30,000 patients into controlled clinical trials. They have completed or are currently conducting more than 100 projects. They have published over 120 manuscripts; 11 in the New England Journal of Medicine and papers in BMJJAMA and Lancet. Craig attributed the success of the group to a combination of science, organisation and passion. He outlined the importance of the culture of collaboration and the need for enthusiasm, fun, organisation, pragmatism, a culture of questioning, collegiality, cooperation, hard work, group over individual and no hierarchy. He also outlined the importance of having a clear vision, mission, values and terms of reference which cover structure and governance, membership, procedures and policies, process of study endorsement, publication policy, meetings and email communication. Ms Rhiannon Tate, Executive Officer of the Australian Clinical Trials Alliance, gave the final talk in the second session. She presented preliminary results from the National Survey of Clinical Trials Networks, which comprised a 50-question online survey, as well as data on all current, and all published studies in the last decade. This was commissioned by NHMRC and aims to provide a comprehensive snapshot report on Australia’s investigator-initiated clinical trials networks, including their structure, activities, achievements and contribution to the health system. 34/36 networks invited to participate responded (94% response rate) and over 1000 published studies from the networks have been identified and entered into a database (~17,000 data points). Sixty-one percent (19/31) of the networks have a dedicated physical office, 80% (25/31) have a dedicated Executive Officer or Senior Manager and 77% (24/31) have paid staff responsible to the network (median of 2.0 FTE staff). Staff spends time on network administration and direct management of research projects, education and training, fundraising and consumer engagement. Network functions are numerous and include most commonly collaborative development of studies (82%), peer review of study protocols and designs (73%), scientific meetings (70%), education and training programs (61%), site selection or acquisition (61%), protocol development (61%), grant writing (58%), consumer liaison (52%), trial management (52%), trial oversight (52%) and formal study endorsement (52%). About a third are also involved in DSMB (36%), liaison with commercial entities (33%), formal mentoring programs (33%), formal manuscript endorsement (33%), advocacy (30%) and charitable fundraising (30%). A fifth (21%) are also concerned with clinical guideline development. The cost of administration in the last year ranged from nil (no administration staff) to $5mill with a median cost of $250,000 per annum. A wide range of sources funds administration including membership fees (7%), charitable (10%), state government (16%), NHMRC (36%), parent body (10%), industry (13%), MRI (3%), university (3%), philanthropic (3%), and ‘other’ (58%). Over half (58%: 52% no fees and 6% with fees) have formal membership, while 39% have informal membership.   In the final session of the first day, Ms Ainslie Cahill, Chief Executive Officer of Arthritis Australia presented her thoughts on the consumer perspective and how consumers can contribute. She acknowledged that while there is little published empirical evidence into the effects of consumer involvement in research or healthcare decision-making, organisations that utilise a patient and public involvement (PPI) model believe wholeheartedly in consumer involvement but have different ways of doing it. A 2014 review found that the most common activities undertaken by health consumers in the UK were steering committee membership and reviewing consumer information sheets. Ainslie noted that tokenism is the biggest risk to consumer involvement. There is a perception in some quarters that consumers are parachuted in merely to tick a box, are ill informed and they bring nothing constructive to the decision-making process. She disagreed with this notion but emphasised the importance of creating clear terms of reference and advised that consumers be recruited in the early stages, so that they may contribute to the structure and operation of what’s required of consumer involvement. Experience shows that consumers can bring important and sometimes novel insights that complement or contrast to those of health professionals, researchers and funders. She noted the many advantages of consumer involvement including:

  • The consumer voice encourages democracy and transparency;
  • The consumer perspective can help reinforce the concept of relevance to research decision-making;
  • Consumers can bring common sense to the design of clinical studies. For example: feasibility and practicality and the impacts some study design factors may have on recruitment and retention (e.g. expecting participants to undergo multiple blood tests, travel, study duration);
  • Such insights can assist in ensuring that the intended endpoints will be delivered in a timely and costly way. Recruitment and retention are absolutely crucial to the success of clinical trials, so listening to consumer views makes sense;
  • Consumers can bring valuable insights into how to implement research findings into everyday practice;
  • Visible involvement of consumers into the prioritisation and design of clinical studies may help to improve recruitment of study subjects;
  • Consumer input may help to soften researcher or funder bias or steer organisations away from sinking substantial funding into areas that are of little concern to consumers;
  • Consumers bring accountability, particularly when public funding is involved;
  • Involvement of consumers may raise the public profile of musculoskeletal clinical research which is important for advocacy efforts and could help to improve government support of currently ill-served services for people with musculoskeletal disorders; and
  • Consumer involvement ha the potential to improve fundraising efforts from the community as well as government.

The downside of consumer involvement can be the resources required, i.e. time and money. However, a properly trained and experienced consumer panel can be a long-term asset, advising on both broad strategy and multiple individual trials. It would be inappropriate to have consumers comment on the scientific feasibility of laboratory research. However, they are well-qualified to comment on the relevance and importance of all types of research in terms of potential benefits to patients. Ainslie congratulated the ANZMUSC Steering Committee for their efforts in coordinating MSK research. She suggested there should be at least one consumer on the ANZMUSC Steering Committee and offered to assist in consumer recruitment via the Arthritis Australia network. Associate Professor Alex Collie, Chief Executive Officer, Institute for Safety, Compensation and Recovery Research (ISCRR) discussed how to build relationships with policy makers. He noted that policy needs are different to evidence gaps and ‘gold standard’ research is not always necessary for policy action. A survey of 372 policy staff from Worksafe and the TAC found that academic research evidence was the least used form of information. He emphasised the need for researchers to accept and even embrace the validity of differing world views, the care needed with language, which can alienate or engage, and the need to be patient, to work hard on relationships and to identify opportunities. He outlined that the engagement mechanism is a critical decision for a new organisation. He presented data demonstrating that positive impacts of the work of ISCRR. Ms Amanda Mulcahy, Senior Program Officer, Implementation Support, Australian Commission on Safety and Quality in Health Care discussed the work of Commission in identifying variations in care and opportunities for clinical trials to address them. She focused upon knee arthroscopy and the findings of the Australian Atlas of Healthcare Variation that found a large variation in arthroscopy rates across Australia with South Australia having the highest rates. Eighty percent of arthroscopies are performed in the private sector. She noted that the OECD had identified eight policy options for improving appropriateness of care including public reporting, setting targets at regional levels, reallocation of resources to alter resource supply in regions with low (or high) utilisation rates, establishment and implementation of clinical guidelines, provider-level reporting and feedback, changes in payment systems, measurement of health outcomes and utilisation of patient decision aids. She suggested that ANZMUSC could consider involvement in clinical guidelines. While there are issues with implementation, they do provide a clear description of best practice. She also highlighted that unrealistic patient expectations of the benefits and harms of interventions can influence decision-making and may be contributing to increasing intervention uptake and health care costs. This would be another area that could be considered by ANZMUSC.   Summary of Invited Presentations: Day 2 (Wednesday April 22nd) In the first session on Day 2, Associate Professor Meredith Temple-Smith, Academic Lead, Australian Primary Care Research Network (APCReN) talked about how to get clinicians research ready focusing on general practice. She described how general practices go about setting up for clinical research, and what infrastructure support is required for this to be successful. She explained what the APCReN is doing to build practice based research networks (PBRNs) and a research culture within the local context of general practice. They involve practitioners as well as academics and generate research that is collaborative and ‘close to practice’ with the objective of producing research that changes practice. It is important to recognise that up until now, research is not a usual part of a GP’s work, there is a shortage of GPs and short consultation times, patients often doctor-shop and each GP practice is a small business and is different. They are each complex adaptive systems that include the staff and patients, patient care and organisational operations. To be successful in the clinic a research protocol needs to be ‘normalised’ (routinely embedded) otherwise it is likely to be either adopted only when remembered or rejected due to staff disregard, subversion or refusal. It must not disrupt daily usual activities. Setting up a clinic to be research-ready requires consideration of all the staff, software, reimbursement and performance feedback. There needs to be an easy method for identifying eligible patients such as an automated GP pop-up alert – this may vary across practices. Incentives include education for CME points, value for the patient and review of own performance. She explained that the role of APCReN is to facilitate research in primary care by building linkages between existing PBRNs, providing advocacy for PBRNs, supporting the establishment of new PBRNs and sharing PBRN knowledge and resources. APCReN can provide advice to non-primary care researchers on appropriate methods for research based in primary care, proven methods for GP recruitment for research, and appropriate costings. Ms Linda Martin, Chief Executive Officer of Arthritis and Osteoporosis Victoria followed with her thoughts on how to get consumers research ready. She outlined the body of literature describing the many barriers and enablers to consumer participation in research. However it is known that people living with musculoskeletal conditions want evidence based information and services, trusted information, consistent information that is the best available for their conditions and their individual circumstances, health professionals to implement best practice and to communicate with each other about evidence-based practice, and they want to make informed decisions. There therefore appears to be a conceptual and pathway gap between consumers’ needs, wants and expectations for research and its translation into practice. Similar to the first speaker of the day, Linda noted that research should not be a stand alone or isolated activity and it needs to be integrated at every level into our models of care, practice and consumer engagement. She advocated for people with musculoskeletal conditions being involved at every stage in the research process from concept development, and identifying the research questions to research design, implementation and review. She also noted that research accountability should extend beyond completion of a single research project and include connection to the key stakeholders, sharing results and translating research into practice. On a positive note, she believes that trusted organisations with a strong consumer engagement and advocacy focus are well placed to recruit consumers, train them to be ‘research ready’ and support their participation in research. We need to understand what motivates consumers to be involved in research and how to inform and support them for optimal engagement. She highlighted the importance of taking an active role in explaining the research process to improve “research literacy”. Consumer organisations such as AOV could play an important role in translating research methods and outcomes into language and information that consumers can orient with, and more importantly, use; working with consumers to understand their motivation and develop frameworks for decision making about participation including consideration of value and risks; supporting consumers in research training; working with consumers to identify what research questions are relevant to them; and supporting consumers to negotiate fair compensation for associated costs. The second in a series of talks showcasing the outstanding achievements of other Australia and New Zealand clinical trial networks was given by Professor Paul Myles, Founding member of the Australian and New Zealand College of Anaesthetists (ANZCA) Clinical Trials Group. He gave an inspiring presentation outlining the history of the group and its many successes. The group began as the MASTER Trial Group in 1996 (to evaluate effects of epidural anaesthesia and analgesia on the outcome of major surgery) and was formalised as the trial network within ANZCA in 2002. Its academic home at the Department of Epidemiology and Preventive Medicine, Monash University was formalised in 2008 with a Memorandum of Understanding with ANZCA. Paul outlined the current structure and governance of the network and the public availability of policy documents including its constitution and strategic plan. The network is led by both Paul, as head of the Monash University academic depart, and the Chair of the ANZCA Clinical Trial Network; and there is central coordination of all trials. At Monash there are four network coordinators (with another 20 based around Australia) whose role is to centrally coordinate the clinical trials, oversee ANZCA surveys, endorse clinical trials and fund pilot grants. They receive some NHMRC infrastructure funds. Successful research funding is dependent upon having an important clinical/scientific question, an updated systematic review (meta-analysis), an expert team (“the best in the country”), practice survey (to understand what is currently being done), pilot studies. The ANZCA CTN have had outstanding success in terms of major practice changing trials involving thousands of patients and an almost perfect record of major grant success. The third and final talk in the series of talks showcasing the outstanding achievements of other Australia and New Zealand clinical trial networks was given by Associate Professor Ed Oakley, who is the chief investigator for the Paediatric Emergency Medicine Centre of Research Excellence and the Paediatric Research in Emergency Departments International Collaborative (PREDICT), a multicentre research network in paediatric emergency medicine. This group was founded in 2004 and its structure and regulations borrowed heavily from existing international research networks. There were 11 founding sites and 4 newer sites, a mix of tertiary paediatric and larger mixed EDs that are geographically spread across Australia and New Zealand. They received initial seed funding for meetings and then set about trying to develop a track record and set a research agenda. They had their first NHMRC success to conduct a 7-centre RCT in 2009 (after a failed attempt in 2008). A CRE was successfully funded in 2013 to provide infrastructure and development support including training of clinician researchers, a PhD program and mentoring program by overseas experts and large scale data management. Several large studies including a knowledge translation trial are underway. Their priorities have been to get research infrastructure at most sites, get protection of research time, link with other groups for knowledge transfer, maximise the CRE infrastructure and find a funding stream past the CRE. In terms of success, they have developed a functional high quality research network from scratch in 10 years, established a good track record, collaboration with multiple specialties and craft groups and are engaging in global research and research groups. Their challenges include lack of ongoing infrastructure support; lack of assured funding and sustainability into the future (no ongoing funding stream and no research stream for clinicians and postdoctoral fellows); development of paediatric emergency medicine as a credible academic discipline; and knowledge translation (including the tension between times for research versus practice change).   Break out sessionsBreak out session 1: Vision, mission and values of ANZMUSC and its structureProfessor Jane Latimer outlined the plans for the breakout session on Day 1. Each small group was asked to consider the overarching vision for ANZMUSC, which should be aspirational (where we want to be) and inspirational (stimulate action); our mission or how we plan to achieve our vision in a short series of statements with due consideration of scope; and what values or principles or standards of behaviour we would consider important for ANZMUSC. They were also asked to consider the ANZMUSC structure, for example this could be simple, acknowledging the early stage of ANZMUSC, a more formalized structure that includes key ANZMUSC committees and external partners, or a new structure suggested by the group. She emphasised the need for good governance that would ensure network primacy over individuals, transparency of rules, an executive that is representative of members (multidisciplinary), is responsible to its members, and turns over at regular intervals. In the reporting back session, spokespeople from each group reported back on the small group discussions. All groups considered that there was a genuine need for a collaborative musculoskeletal clinical trials network. There appeared to be fairly consistent themes across groups that the primary aim should be to perform high quality research that would maximally improve the quality of health care and patient outcomes. There was discussion about whether or not the network should only do clinical trials or whether it could also include other study designs recognising that preliminary work might be needed before being ready for a trial. Mentoring and training were considered important. The ideas of all groups were recorded as statements and the working group undertook to synthesise these into a draft vision, mission and values statement for summit feedback on Day 2. On Day 2, the draft vision, mission and values of the ANZMUSC Clinical Trials Network were presented to the summit attendees for consideration. The final version that was accepted by the majority of those present is shown below. Vision To optimise musculoskeletal health through high quality, collaborative clinical research. Mission

  1. To identify the key clinical research questions relevant to musculoskeletal health.
  2. To improve the scientific quality of musculoskeletal research and its translation into policy and practice.
  3. To facilitate and endorse clinical research based on scientific quality and potential to improve health outcomes.
  4. Advocate for musculoskeletal research support.
  5. Foster collaboration between research groups and stakeholders.
  6. Advance the understanding of research through mentoring and education.


  • Visionary
  • Altruistic (generous, benevolent)
  • Scientific integrity
  • Transparency
  • Equity
  • Mutual respect
  • Health consumer centred
  • Ethical

 Break out session 2: Initial Goals and how these can be achievedProfessor Ian Harris outlined the plans for the breakout session on Day 2.  Participants were asked to consider what needs to be achieved before the next annual meeting to set up the future success and sustainability of the group. They were asked to identify the most important goals. For each proposed goal they should consider its relevance, its necessity and whether it is achievable; they should precisely state the goal and how it will be achieved including who would be involved and any barriers to overcome. Finally they were asked to rank them in order of priority. In the reporting back session, spokespeople from each group reported back on the small group discussions. Again there were similar themes noted. The following summarises the agreed one-year goals.  One Year Goals:

  1. Structure and Governance

Clear and transparent structure and governance in place in 12 months

  • Caretaker working group in short term
  • Expand working group size and membership to include representative from New Zealand and consumer representative (skills based))
  • Appoint Executive Officer
  • Undertake stakeholder mapping
  1. Define Key Functions of ANZMUSC

Develop policy and processes regarding how ANZMUSC will function

  • Facilitate high quality research
  • Link researchers answering same questions
  • Multi-site recruitment, contribution, national, international collaboration
  • Methodology input, mentorship, peer review
  • Define priorities
  • Endorse any high quality trial (not just priority area trial). No limitation on this.
  • Funding longer term
  1. Funding

Seed funding options depend upon available funding

  • Executive officer (FT/PT) appointed early to enable us to move forward
  • Consultancy firm?
  • Prioritise how this money will be spent
  • Implement structure and governance
  • Goal amount $200,000 – $250,000??
  1. Establishing and Expanding Membership
  • Who can be a member – process for membership (individual); separate category for consumer membership?; and company membership?
  • Nomination and seconder, board has final approval
  • Know who our members are
  • Relevant registration information to be recorded, easy website process
  1. Plan future meeting and communication strategy
  • Next meeting during ACTA Sydney, Oct 7-10, 2015
  • Plan full meeting for April 2016
  • Communication via website
  • Summary of meeting for those who could not attend including agreed vision, mission and values to be placed on the website
  • Funders stakeholder meeting (consumer and professional organisation etc.) to discuss ways of establishing 5 year infrastructure support
  • Apply for ANZMUSC CRE funding
Date & Time: 21 April 2015 9:00 am AEST -
22 April 2015 5:00 pm AEST
Venue: AMREP Education Centre, Alfred Hospital, Melbourne