Priorities for Primary Health Care Research, Evaluation and Development in Australia

Priorities for Primary Health Care Research, Evaluation and Development in Australia FINAL REPORT Priority Setting Process: Stage One May 2001 Libby Kalucy Barbara Beacham Jane Raupach Judith Dwyer Louis Pilotto

Primary Health Care Research and Information Service 2001 This work is copyright apart from any use as permitted under the Copyright Act 1968. No part may be reproduced by any process without prior written permission ISBN 0 9578862 4 1 The National Information Service is now the Primary Health Care Research and Information Service. The new name more accurately reflects the broad health and research focus and activities of this organisation. Published by the Primary Health Care Research and Information Service, Department of General Practice, Flinders Press, Adelaide Printed by Flinders Press October 2001

FOREWORD Over recent decades, particularly since the World Health Organisation s Alma Ata and Jakarta Declarations, there has been a growing international recognition of the role of the primary health care sector. There is increasing recognition of the potential for primary health care to improve the health of individuals and the overall health of the community. As in all areas of health care delivery, research needs to underpin the evolution of the primary care agenda. The importance of primary health care research was highlighted recently in the Health and Medical Research Strategic Review. The General Practice Strategy Review and several international reviews have also reinforced the importance of primary health care research and development. Australia s response to the need to develop and maintain an evidence base for clinical and health service delivery decisions has been to establish a Primary Health Care Research, Evaluation and Development Strategy. The Strategy is designed to support primary health care research that is strategic, that addresses key priorities and harnesses expertise across disciplines and institutions. The components of the Strategy are structured to provide a range of support to the general practice and primary health care research community. Two primary objectives are developing and enlarging the spectrum of knowledge that underpins the evidence base for general practice and primary health care health services; and fostering the skills and reflective evidence based cultures among primary health care practitioners. As a major initiative under the PHC RED Strategy, the General Practice Partnership Advisory Council commissioned a comprehensive two-stage process to identify the major research priorities in the field of primary health care. The Primary Health Care Research and Information Service, Flinders University, was engaged to undertake the first stage of this process. This Report by the Primary Health Care Research and Information Service, Flinders University, (formerly the National Information Service) on the first stage of the priority setting process, represents a significant contribution to the major task in establishing the research priorities for Primary Health Care Research, Evaluation and Development in Australia. The identified priorities span the following fields:! evidence based practice;! quality of care;! models of organisation and delivery of primary health care;! integration and multidisciplinary practice;! economic issues;! health inequalities and determinants of health; and! illness prevention and health promotion. i

The Report s recommendations identify the future directions for primary health care research in Australia. They also reflect the interdependency and complexity of the issues and the need for collaboration between systems and disciplines to produce relevant evidence for decision making. And while much more needs to be done, particularly in turning the priority areas into action areas, this Report lays a solid foundation upon which we can build a strong and vigorous ethos of multi-disciplinary research, with international standing, in the primary health care field. Andrew Tongue Assistant Secretary General Practice Branch Department of Health and Aged Care October 2001 ii

TABLE OF CONTENTS Foreword i Acknowledgements iv Project team iv List of abbreviations v Executive summary vi Recommendations ix Background 1 Methods 6 Results 11 Discussion 22 Conclusions 31 Appendices A Description of approaches 33 B Sequence of approaches used in PHC RED 38 C Response rates by stakeholder sector 39 D List of participants for each approach 41 E Results of individual approaches 50 iii

ACKNOWLEDGEMENTS The project team would like to thank everyone who contributed to this stage of the priority setting process. We are particularly grateful for the thoughtful and generous contributions from those who responded to the survey and call for submissions, participated in the workshops and attended the National meeting and Canberra meeting. PROJECT TEAM The project team for Stage One of the priority setting process included: Libby Kalucy Senior Research Fellow and Manager, PHCRIS Barbara Beacham Research Officer, PHCRIS Dr Jane Raupach Research Fellow, PHCRIS (until March 2001) Assoc Prof Judith Dwyer Consultant and workshop facilitator, LaTrobe University Fiona Thomas Finance & Administration, PHCRIS Professor Louis Pilotto Director, PHCRIS and Head, Department of General Practice, Flinders University Dr Ellen McIntyre Senior Research Fellow, PHCRIS (from March 2001) Ann-Maree Hanratty Assistant Director, DHAC General Practice Branch, Research and Quality Section Margaret MacDonald Director, DHAC General Practice Branch, Research and Quality Section iv

LIST OF ABBREVIATIONS AAAGP ANAPHI ATSIC BMJ CHF DHAC GP GPEP GPPAC GPPAC-RED NGT NHMRC NHPAC NICS NIS PHCRIS OATSIH PHC PHC RED RACGP RAWG SCRIF SRDC Australian Association of Academic General Practice Australian Network of Academic Public Health Institutions Aboriginal and Torres Strait Islander Council British Medical Journal Consumers Health Forum Commonwealth Department of Health and Aged Care General Practitioner General Practice Evaluation Program General Practice Partnership Advisory Council General Practice Partnership Advisory Council Research evaluation development subgroup (now standing committee) Nominal Group Technique National Health and Medical Research Council National Health Priority Action Council National Institute for Clinical Studies National Information Service Primary Health Care Research and Information Service Commonwealth Office of Aboriginal and Torres Strait Islander Health Primary Health Care Primary Health Care Research Evaluation and Development Strategy Royal Australian College of General Practitioners Research Agenda Working Group States and Commonwealth Research Issues Forum Strategic Research Development Committee v

EXECUTIVE SUMMARY In 2000 the Department of Health and Aged Care, in consultation with the General Practice Partnership Advisory Council, developed the Primary Health Care Research, Evaluation and Development Strategy. The PHC RED Strategy aims to foster research capacity building in Australian general practice and primary health care. A key element of the Strategy is a twostage priority setting process, to provide advice to government on primary health care research evaluation and development priorities. The priorities are to guide the range of activities to be funded under the PHC RED Strategy over the next three to five years, including investigator driven research, commissioned research, scholarships and fellowships and the National Primary Health Care Research Institute. The Primary Health Care Research and Information Service at Flinders University in South Australia was commissioned to conduct the first stage of the priority setting process using methods endorsed by the GPPAC RED Standing Committee. This involved collection and collation of systematic structured input from key stakeholders from December 2000 to May 2001 through a survey, a public call for submissions, a series of structured workshops and a National Meeting. Key stakeholders were primary health care providers (general practice and others), researchers (general practice, rural health and others), consumers and government representatives. Results of Stage One Priorities for PHC RED Rural and remote populations, Aboriginal and Torres Strait Islander communities, and people who are disadvantaged or hard to reach due to their health, social, economic or environmental factors were identified in this consultative process as the focus for priority research, evaluation and development. Seven thematic areas received substantial support across a broad range of stakeholders. The topics within these areas are oriented towards practical solutions ranging from clinical issues encountered by general practitioners in their everyday practice, to research into methods to address factors outside the health system, which influence inequalities in health status between different groups of Australians. The seven areas are:! Evidence based practice, including uptake of research! Quality of care! Models of organisation and delivery of Primary Health Care! Integration including multidisciplinary practice (horizontal and vertical)! Economic issues, relevant to optimal use of resources! Health inequalities and the determinants of health vi

! Illness prevention and health promotion The National workshop recommended these areas should not be ranked against each other, as they were closely interrelated. All types of research - clinical, health services and health systems research are covered by specific topics within each thematic area, however the major focus is on health services and health systems research and development. The priority areas and topics identified through this process are consistent with those from other recent priority setting processes in Australia, including the National Health and Medical Research Council Strategic Research Development Committee, the Commonwealth DHAC Research and Development Committee and the States Commonwealth Issues Forum. Clinical conditions and clinical practice, which are the top priorities identified by members of the Australian Association of Academic General Practice in 2000 2001, fit within the PHC RED priority areas. The priority areas and topics also overlap with the strategic directions of the National Health Priorities Action Council. They are consistent with the focus of the NHPAC on the care continuum, and of the Public Health Partnership Group on primary prevention. Research priorities for Aboriginal and Torres Strait Islander people and communities, that are being developed through the Research Working Agenda Group of the SRDC, will be included in PHC RED once these results are available. Principles and criteria for PHC RED The importance of clarifying both the principles of conducting primary health care research and the criteria for assessing proposals and completed research was raised throughout this stage of the process. Identification of these principles commenced during this stage, and should continue through Stage Two to contribute to the PHC RED Strategy. Other issues Areas of tension between an individual or population focus, and between primary prevention or illness management were apparent throughout this stage of the process. These tensions were associated with differences in philosophical perspectives, ideology and practice of stakeholder groups involved in primary health care. This stage of the priority setting process used a definition of primary health care focussing on general practice, general practitioners and those who would benefit from closer integration with them. Interpretation of this definition raised issues about the intended scope of and equitable access to PHC RED research funding. This was a particular concern for those rural vii

and remote communities where a general practitioner may not be the principle provider of primary health care. This consultation process has fostered public debate and dialogue between stakeholder groups around these issues, however there is still much to be resolved for successful implementation and uptake of PHC RED Strategy activities, including developing accepted shared meanings amongst stakeholder groups around terms such as integration, system, service and in particular primary health care. Moving forward- Stage Two The second stage of the priority setting process needs to include all relevant stakeholders and draw on the research community s specific expertise and experience in the identified thematic areas to review existing evidence and identify the gaps, in developing components of the PHC RED Strategy. viii

RECOMMENDATIONS 1 That priority research, evaluation and development focus on rural and remote populations, Aboriginal and Torres Strait Islander communities, and people who are disadvantaged or hard to reach due to their health or other social, economic or environmental factors. (See p 22) 2 That the following inter-related thematic areas, together with their associated specific topics, be adopted as priority areas for primary health care research, evaluation and development:! Evidence-based practice, including uptake of research! Quality of care! Models of organisation and delivery of primary health care (current and innovative)! Integration including multidisciplinary practice (horizontal and vertical) and alternative linkages! Economic issues, particularly optimal use of resources! Health inequalities and the determinants of health! Illness Prevention and health promotion (See p 23) 3 That the priority areas be adopted as a system of inter-related areas, topics and issues. (See p 23) 4 That the scope of PHC RED funding include clinical, health services and health systems research, and be consistent with the stronger focus on health services and systems research of the priority areas identified in this process. (See p 24) 5 That the scope of PHC RED funding include investigator-driven, priority-driven and capacity-building research funding. (See p 25) 6 That the priorities for Aboriginal and Torres Strait Islander research identified by the RAWG be included in the PHC RED Strategy when they are available. (See p 26) ix

7 That the focus of PHC RED Strategy be clarified and made public. (See p 27) 8 That fair and equitable access to PHC RED research funding be available to all stakeholder groups involved in primary health care, in particular those in rural and remote locations. (See p 27) 9 That future development, planning and implementation of PHC RED adopt a crossprogram approach within DHAC. (See p 27) 10 That the process of identifying and developing agreed criteria and principles for assessing relevant high quality primary health care research proposals be continued throughout Stage Two of the priority setting process, with input from all relevant stakeholder groups. (See p 28) 11 That, as proposed for Stage Two of the priority setting process, the specific research topics identified within each thematic priority area be refined in terms of confirmation, feasibility and implementation planning. (See p 29) 12 That the expertise of the Australian research community, particularly academic general practice, rural health and public health, be drawn on throughout Stage Two of the priority setting process. (See p 30) x

BACKGROUND 1.1 The Australian Primary Health Care Research, Evaluation and Development Strategy The PHC RED Strategy is a $50 million five-year National strategy that the Commonwealth Minister for Health, the Hon Dr Michael Wooldridge, announced in 2000. The Strategy originated from recommendations made in 1998 by the General Practice Strategy Review Group, 1 and aims to foster the building of research capacity in Australian general practice and primary health care. 2 The General Practice Branch of DHAC developed the PHC RED Strategy following wide-ranging discussion and advice from GPPAC. This included extensive consultations held during 1998-2000 on how to implement the GPSR recommendations. 3 The key focus of the PHC RED Strategy is on general practice in the Australian primary health care system, with an emphasis on integration and collaboration. 4 The Strategy has been developed at a time when primary health care initiatives are perceived to be a costeffective way of dealing with the health issues of today. The current climate in general practice in Australia is one of change and reform with increasing recognition of the role of general practice and of general practitioners in public health activities as part of the primary health care (PHC) network. 5 The primary health care setting has been defined broadly by the World Health Organisation Alma Ata Declaration as:...referring to curative treatment given by the first contact providers as well as promotional, preventative and rehabilitative services provided by multi-disciplinary teams of health care professionals working collaboratively. 6 A brief overview of the PHC RED Strategy, its key stakeholders and main elements is provided in Box 1. 1 General Practice: Changing the future through partnerships: Report of the General Practice Strategy Review Group (1998) Commonwealth of Australia. 2 Unpublished document Overview of the Primary Health Care Research, Evaluation and Development Strategy (March 2001), Department of Health and Aged Care, Canberra. 3 Mudge, P (1999) Research and development in General Practice: Report on a Consultancy - Unpublished report to the General Practice Branch DHAC, Canberra; Oceania Health Consulting (1999) Progressing Primary Care Research Evaluation and Development 4 Unpublished document Primary Health Care Research, Evaluation and Development, (2000) Strategy Document, DHAC, Canberra. 5 2000, General Practice and Population health Joint Advisory Group on General Practice and Population Health, Commonwealth Department of Health and Aged Care, http://www.dhac.gov.au/hsdd/gp/phc.htm 6 Cited in General Practice in Australia 2000, DHAC General Practice Branch, Canberra, p160. 1

Box 1 The PHC RED Strategy The Strategy will:! Provide advice to Government on primary care research, evaluation and development priorities! Ensure research findings are disseminated effectively and facilitate uptake in practice! Generate new knowledge to contribute to the development of the evidence base for primary health care and related health services research! Build on the existing research, collaborations and capacity in general practice at the academic, regional and practice levels to improve the health of all Australians with special focus on rural and remote communities! Target funding to obtain maximum value In the context of this program research will inclusively consider a broad range of activity including primary research, applied clinical and health service research. A mixture of investigator initiated and priority driven research will be provided for, but the emphasis is expected to be on priority driven research. Key stakeholders include:! Academic Departments of General Practice, Rural Health, Schools of Population and/or Public Health and other primary care disciplines! The Royal Australian College of General Practitioners! Australian College of Rural and Remote Medicine! Divisions of General Practice! Primary health care practitioners including general practitioners! Consumers! Health policy makers and administrators The key elements of the Strategy are:! The establishment of primary health care research priorities! Provision of development/capacity building funding to Academic Departments of General Practice and Rural Health! Provision of a Research Grants Program (replacing the General Practice Evaluation Program (GPEP))! Establishment of the Primary Health Care Research Institute Source: Overview of PHC RED Strategy March 2001- DHAC 2

1.2 Priority driven research Research in General Practice and PHC traditionally is characterised by a broad base of activity. The General Practice Evaluation Program (1990 to 1999) in particular has provided a substantial foundation of descriptive research to this area. 7 8 In 1999, the Wall report emphasised that: the unique aspects of primary care delivery in Australia require focused research to improve upon it. The focus could be settings, populations, links to other providers, health system reform, financing etc. Investigator driven research will address these issues but in a piecemeal way. There needs to be a more strategic approach if we are to make improvements within a reasonable time frame 9 The matter of a more strategic approach to research and development was also a key recommendation of the 1999 Wills Review, which advocated a program of priority driven research; aimed at the short-to-medium term needs of the health system and its efficiency, effectiveness and equity. 10 Priority driven research is described by the Wills Review as part of a new framework for managing research in Australia. This new framework puts the traditionally defined areas of health and medical research (Bio-Medical; Clinical; Public Health and Health Services research) within two categories, Fundamental Research and Priority Driven Research. Wills emphasises that within such a framework, all research areas can and should contribute to both categories, 11 however the Review acknowledges that a significant proportion of biomedical and clinical research would be investigator initiated, and a significant proportion of public health and health services research would be priority driven. Refer Figure 1. 7 Raupach J, Pilotto L. Randomised trial within the General Practice: Evaluation Program: why so few? Australian Family Physician 2001 30 (5): p 504-507 8 National Information Service 2000 Decade of GPEP Projects 1990 1999. Adelaide: Flinders Press 9 Oceania Health Consulting (1999) Progressing Primary Care Research Evaluation and Development (Wall report) 10 The Virtuous Cycle Working together for health and medical research Health & Medical Research Strategic Review (Wills Review) (1999) DHAC, Canberra. 11 Ibid p5 3

Figure 1 - Wills Review 1999: Strategic framework for research Fundamental Research. Investigator initiated. Focus on excellence Bio-Medical Clinical Public Health Health Services Fundamental Research: Build new knowledge and intellectual property Strategic Research: Address Australia s unique issues Development and Evaluation Research: Apply the world s knowledge in Australia s context Priority-Driven. Informed priority setting engaging Fed/State health authorities. Embrace investigatorinitiated, peerreviewed proposals within broad priorities. Build capacity. Integrate into policy and practice The key categories of the Wills framework are described in Box 2. Box 2 Key categories - strategic research framework Fundamental research gives a broad coverage of research areas to ensure local exposure to, and capability in, generating new knowledge. This research is focused on local competencies and could cover such areas as cancer, heart disease, hypertension, immunology, asthma and many others. It provides new insight not only for the benefit of Australians but also for the rest of the world. It also provides opportunities for Australia to benefit economically in the process of developing the benefits of this new knowledge for the market. Priority-driven research covers strategic, development and evaluation research. Strategic research addresses local issues that are unique, significantly over-represented or more severe, and yet under-research in Australia. This may include aboriginal health, skin cancer, asthma and health service problems. It also includes urgent problems that may need an integrated approach such as in the case of HIV/AIDS. Development and Evaluation Research assesses new knowledge, evaluates new health service initiatives, and informs policy and practice for the benefit of the community. This might involve developing and evaluating clinical interventions and health programs, evaluating evidence-based clinical guidelines, evaluating the costs of new health service interventions and the extent to which they deliver benefits and developing prevention programs. Source: The Virtuous Cycle Working together for health and Medical Research Health and Medical Research Strategic Review (1999) DHAC, Canberra. The Wills Review also recommends that priority driven research programs use a different approach to the one that has dominated health and medical research up to now. 12 The main elements of such an approach are listed in Box 3. 12 Ibid, p6 4

Box 3 Main elements of priority driven research programs! Informed priority setting that engages federal and state health authorities, practitioners and consumers! Embracing investigator-initiated peer-reviewed proposals within broad priority areas! Greater recourse to contracted research in very specific areas of need, building a capacity for prioritydriven research! A more explicit approach to integrating this knowledge into policy and practice Source: The Virtuous Cycle Working together for health and Medical Research Health and Medical Research Strategic Review (1999) DHAC, Canberra 5

METHODS The GPPAC process GPPAC proposed that priorities for PHC RED would be determined through a strategic approach using a two stage consultative process that included identification of key criteria and involvement of all relevant stakeholders. 13 An overview of the main elements of each stage is included in Box 4. Box 4 The GPPAC endorsed priority setting process for PHC RED Stage One Covers a variety of preliminary activities including identification of relevant stakeholders in general practice and primary health care to provide input to the process followed by collection and collation of systematic structured input from these key stakeholders. (The results of this process are provided in this report.) Activities in Stage One culminate in GPPAC consideration of recommendations and reporting to the Minister for Health and Aged Care. Stage Two Entails refinement of the priorities identified in Stage One and development of a work plan, to be undertaken when the new structure for research, evaluation and development is known and infrastructure is developed. It is proposed that this stage involves relevant stakeholders, funded under new arrangements, organising for the broad priorities developed in Stage One to be subject to further development (where necessary) in terms of confirmation, feasibility studies, reviews and implementation planning. Criteria to guide the priority setting process: The following set of criteria, were developed and endorsed by GPPAC for all stages of the process. 1. Is the issue of importance to Australia, such that overseas research evaluation and development processes are unlikely to address it? 2. Is the issue of international importance and is Australia well placed to make a key contribution? 3. Is the issue deemed to be an emerging issue for Australia? 4. Is the issue focussing on primary health care which can make a substantial impact on the health of a disadvantaged group within the Australian population? 5. Is the issue likely to contribute to reducing health inequalities in Australia? 6. Is the issue adversely and unnecessarily impacting on efficiency quality and/or cost of primary health care? 7. Is the issue consistent with known Government priorities such as the National Health Priority Areas, improving the health of Indigenous Australians and of remote and rural Australians? 8. Is the research likely to contribute to an effective and necessary primary health care service intervention or improvement? Source: A proposed priority setting process 2000, DHAC 13 Unpublished Document - GPPAC, A proposed priority setting process, 2000, DHAC, Canberra. 6

2.1 Implementing Stage One The Primary Health Care Research and Information Service, Flinders University, Adelaide, was commissioned to conduct Stage One of the priority setting process, in close consultation with the Research and Quality section of the General Practice Branch of DHAC. In implementing Stage One, the broad aims of the PHCRIS were to identify priorities that:! will guide the range of activity to be funded under the PHC RED Strategy over the next three to five years, including investigator driven research, commissioned research, scholarships and fellowships and the National Primary Health Care Research Institute! are supported by a broad range of stakeholders involved in primary health care research, evaluation and development, including primary health care providers (general practice and others), researchers (general practice, rural health and others), consumers and government representatives. 2.3 Methods for Stage One 2.3.1 Development of methods The methods were developed in consultation with DHAC Research and Quality Section, in line with the process endorsed by GPPAC. The methods were informed by the existing literature on priority setting in primary health care research and other health research 14 15 16 17, however the approaches were largely adapted from a similar priority setting process conducted by the NHMRC National Breast Cancer Centre. 18 2.3.2 Approaches used Several approaches were used including:! A survey of stakeholders - December 2000 to February 2001! A public call for written submissions - December 2000 to February 2001! Three structured stakeholder workshops using a nominal group process February 2001! A National meeting of stakeholders from peak organisations involved in primary health care, to discuss and endorse the results of preceding stages of the process March 2001 14 15 16 17 18 Wyke S, Bond C, Morrison J, Ryan K and Sullivan F, Research Priorities in Primary Care (1999). A Report from the CSO s Primary Care Implementation Committee. Chief Scientist Office Primary Care Implementation Committee. Whitford D, Jelly D, Gandy S, Southern A, Van Zwanenberg T, (2000) Making research relevant to the primary health care team. British Journal of General Practice 50, pp 573 576. Marlin A, Redman S, Clarle C, Clark R, Boyle F. (1996) Breast Cancer Research in Australia: current research and future priorities, NHMRC National Breast Cancer Centre Vella K, Goldfrad C, Rowan K, Bion J (2000) Use of consensus development to establish research priorities in critical care, in BMJ, 320: pp 976-980 (8 April). Martin, et al, op cit 7

A detailed description of each approach is provided in Appendix A (p 32). The approaches were selected to support the participation of a wide range of stakeholders and to generate ideas. The public call for submissions provided an opportunity for input to the process from individuals and groups who had not been selected to take part in other approaches. In April 2001, a meeting of DHAC representatives was added at the request of the Research and Quality Section of DHAC. This meeting was included to further optimise the effect of the PHC RED Strategy by providing opportunity for participants from different programs to identify priority areas and topics of common interest and to identify barriers to different areas of DHAC working with the PHC RED program. 2.3.3 Sequence of approaches Results from the survey and submissions were provided as background information to participants invited to the series of stakeholder workshops held in February 2001. At the National meeting, the synthesised results from the first three approaches (the survey, call for submissions and series of stakeholder workshops) were used as the basis for discussion, leading to revision where appropriate and endorsement of the results emerging from earlier phases of the process. For the DHAC Meeting the results from the National meeting were compiled and provided as background information to participants. This sequence is illustrated in Appendix B (p 37). 2.3.4 Stakeholder selection The PHCRIS aimed to ensure balanced representation of a broad range of stakeholders with an interest in primary health care research, evaluation and development. To achieve this aim, and assist with proportional stakeholder selection across approaches, a sampling frame was developed with stakeholder representation stratified in the following proportions: Table 1: Sampling frame Sector Sampling Frame % Providers 40 Academic researchers 30 Funders/policy makers 20 Consumers 10 8