International Perspectives

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					International Perspectives


                                     Work package 11

                             University College London

                                       Mark McCarthy

                                      August 31st 2007
Table of Contents

1.0      International Perspectives ..................................................................................1
   1.1      Public health research in the USA. ................................................................1
   1.2      International Health Research........................................................................2
   1.3      Patient Safety .................................................................................................4
   1.4      Public health research in Canada ...................................................................6
   1.5      Public health research in Australia ................................................................8
2.0      AHRQ Health Services Research ......................................................................9
3.0      Research Priorities for the Agency for Healthcare Research and Quality.......15
4.0      Public health research in the USA: what can Europe learn? ...........................17
   4.1      Agency for Healthcare Research and Quality (AHRQ)...............................17
   4.2      National Institutes for Health (NIH) ............................................................18
   4.3       Centers for Disease Control ........................................................................19
   4.4      Discussion ....................................................................................................21
5.0      References........................................................................................................23
1.0    International Perspectives
SPHERE Workpackage 11 takes an international perspective on public health
research. Three themes have developed forming the work for the first phase - an
appreciation of arrangements for public health research in the USA; understanding
links to the Global Health Research Forum; and work on Patient Safety in association
with the World Alliance for Patient Safety.


1.1    Public health research in the USA.

Public health research in the USA reflects the strong emphasis of that country on
support for research tempered by the reality, as in England, that health research is
dominated by the Biomedical sector. Three national sector organisations manage
portfolios of covering public health research - the National Institutes of Health, the
Agency for Health Quality and Research and the Centres for Disease Control.

A visit was made to these three organisations by the Partner in May 2005, providing
an overview of their activities. It can be said that, despite the strong acknowledge
responsibilities of the Federal government for protecting and improving the health of
the nation, none of these three organisations provides a central point of reference for
public health research. A report is provided as an appendix.

The National Institutes of Health has its focus mainly on laboratory research, and
also funds research through disease-groups - the different institutes. There is a strong
political link, as politicians tend to see health issues in terms of specific diseases (‘a
cure for cancer’… etc). One part of NIH undertakes coordination of prevention
across the Institutes, and keeps some coordination link with the Centres for Disease
Control.

The Agency for Healthcare Research Quality is a much smaller agency, with its
focus on health services. It has three programme areas: 1) Supporting improvements
in health outcomes, 2) Improving quality and patient safety, and 3) Identifying
strategies to improve access and foster appropriate use and reduce unnecessary
expenditures. (See Appendix 2 for details). Note their mechanisms for research
support include separate calls for (a) small grants (b) large conference support (c)
economic evaluation (d) co-sponsored research.

The CDC, the Centres for Disease Control and Prevention, is a direct part of the
Government’s Department of Health and Human Services. It has a broad remit in
providing advice and service to State public health services as well as national and
international advice. CDC supports the research objectives of the internal institutes
within CDC, supports academic ‘Prevention Control Centres’, which encourage
participatory research between academic institutions and local communities, and
maintains a national overview of the research agenda




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1.2    International Health Research

The 90/10 principle indicates that 90% of research is undertaken for 10% of the
world’s disease burden, and the Global Forum, working through WHO, seeks to
redress this balance. It works with the Council on Health Research for Development,
and has a particular interest in health systems research.
The Forum seeks a ‘multiplier’ effect, its own resources being amplified through the
influence exerted on other agencies and individuals. It seeks to stimulate ‘new
knowledge, ideas, initiatives and partnerships’. The Global Forum has identified the
following priority areas on which it is currently working:
    ⋅ Sexual and reproductive health (SRH). It is clear that many of the global targets,
      including reducing poverty and maternal mortality, empowering women and
      halting the spread of HIV/AIDS will not be achieved without considerable more
      attention to SRH. The Global Forum is surveying the current status of SRH in
      poorer countries, and developing an agenda for research..
    ⋅ Equity and poverty. A Poverty and Equity team will address evidence on the
      relationships between poverty and ill health, and the impact of globalisation on
      health and development.
    ⋅ Priority setting. Studies to identify the priority setting processes used led to a
      synthesis that drew on earlier work by various other bodies, combining the best
      available methodologies into a ‘best practice’ tool termed the ‘Combined
      Approach Matrix’, to assist priority setting for health research on a range of
      diseases (e.g. tropical diseases), conditions (e.g. maternal mortality) and
      determinants (e.g. indoor air pollution; tobacco use).
    ⋅ Research capacity strengthening. Even low-income countries need to establish
      and nurture some capacity for health research, in fields such as health policy and
      systems, social sciences, and behavioural and operational research. The Global
      Forum notes that, whereas in 2001 no LMICs had reached the level of 2%
      allocation of their national health budgets to health research, by 2004 four had
      done so (Brazil, Cuba, India and Mexico).

SPHERE has the potential to assist in this, albeit from the perspective of the Western
world’s research capability rather than directly within the poorer countries.
Nevertheless, the regions neighbouring the EU, including Eastern Europe and the
Balkans, the Central Asian Republics and Middle Eastern countries are all potential
partners in developing public health research, with important impacts on health policy
and implementation, as well as political benefits.

Professor McCarthy attended the 8th meeting of the Global Forum 16-20 November
2004 (with support of DG Research, prior to starting of SPHERE) There were around
900 participants from 450 institutions in 109 countries. Participants represented
governments, multilateral and bilateral aid agencies, international and national
foundations and NGOs, women's organizations, research institutions and universities,
the private sector and the media. The programme featured ten plenary sessions, 56
parallel and special interest group sessions, 90 posters and 40 market stalls. The
Forum demonstrated the range of interests of countries and researchers, and the
requirement for continuity and finance. International organizations, such as World
Bank and OECD, were present in recognition of their potential contributions.



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Professor McCarthy attended the 10th meeting of the Global Forum in Cairo, 29
October to 2 November 2006, and with a special interest to explore relationship with
EMRO countries. These large conferences bring people with a range of issues
together. The primary objective is to increase ‘health’ research in low-income
countries.

The 2007 conference is held in Beijing 2007, and a poster for SPHERE was accepted.
Over the ten years of these global conferences, it is evident that the issues have
considerably changed over this period, through the advent of major new funds for
health from private foundations and international donors. There is certainly a new
welcome emphasis on solutions to low-income health issues, particularly infectious
diseases. There is also recognition of the interdependency of health and economic
development, and inclusion of infant mortality within the Millennium development
goals.

COHRED
One favourable outcome of the 2006 conference was an opportunity to learn more
about COHRED (Council on Health Research for Development). This small group
originated from WHO, but are now funded from self-raised grants. Their work, in
some ways, is similar to SPHERE, but for regions not including Europe. The work
with governments that are sympathetic in developing a culture towards health
research, often using international collaborative projects or country twinning. The
provide an important clearing-house resource for countries. It therefore became
appropriate to include them within a further proposal for FP7 funding (see below)

Citizen participation
The conference held by the European Public Health Alliance in Bratislava in March
2006 (see SPHERE Workpackage) provided an opportunity to think about the needs
of the new accession countries. The conference had participants from all the
countries, and was held in English. The Literature Reviews Workpackage of SPHERE
had shown that levels of health research were generally lower in these countries than
in the former EU15 (although the practical costs of public health research, low in
technology costs and high in skills, should not be a barrier). The conference
demonstrated an opportunity for strengthening NGOs’ work on public health in
accession countries, and fitted with the interest of EUPHA in continuing engagement
in support for public health research. A fiche from the proposal submission (FP7-
217605) is shown below.

STrengthening Engagement in Public health research

Support Action for SiS-2007-1.2.1.1 – CSO capacity building in research
Coordinator: Professor Mark McCarthy,

Participant organisation name Country
1 (Coordinator) University College London, UK
2 European Public Health Association, NIVEL, NL
3 Latvian Public Health Network, LPHN

Proposal
Scientific and technical quality relevant to the topics addressed by the call:
Concept




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STEPS is a project to promote engagement of civil society organisations in public health research, and
improve quality of life for Europe’s citizens. It will bring civil society organisations – voluntary
groups, professional organisations, institutes and researchers – in the new Member States into dialogue
with national health ministries in national workshops, hold a joint European conference to integrate
learning, share this across European voluntary sector organisations, provide materials for agenda-
setting, and disseminate to international audiences. Support for health research through CSOs will
promote the Lisbon Agenda, provide structuring for future health research in the Seventh Framework
Research Programme, and contribute to developing the European Research Area.

Engagement of civil society organisations was a feature of SPHERE Workpackage,
but could only be developed in a moderate way. This new call would allow much
more development, especially within countries and using own languages, so that there
would be dissemination beyond English-speakers (who tend to be researchers but not
CSOs).



1.3     Patient Safety

European Patient Safety Research Conference

Porto 2007

In March 2006, UCL was approached to lead a proposal for FP6 funding for a
European Conference on Patient Safety Research. There was an appropriate
dimension of the international work of SHERE, as it engaged with the World Health
Organisation (HQ) and brought national, European-level and international
components together in relation to developing a collective research agenda on a public
health topic.

The agenda for patient safety research has been enhanced by the establishment of the
World Alliance for Patient Safety at WHO (Geneva). The Alliance has set one of six
priorities as research, and has a sub-committee developing its research agenda. At the
same time, the DG Sanco High Level Committee on Health has prioritized Patient
Safety, and this area has been subject of proposals to the Public Health Programme.

The field of Patient Safety Research was chosen as one of the subjects in the SPHERE
Workshop proposed to be held at the EUPHA November 2006 Conference in
Montreux. The application successfully passed the evaluation, and Dr Itciar
Lazargoitia (WHO Geneva, Chair of the World Alliance for Patient Safety) was the
speaker.

The proposal for a Conference on Patient Safety Research was positively evaluated by
the European Commission DG Research. Negotiation was completed during October
2006, and preparations initiated for holding the Conference in Porto in September
2007, in association with the Portuguese Presidency of the Council of Ministers.




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The Abstract for the Proposal is as follows:

It is now widely recognised that there are limitations as well as benefits to patient care. We need to
measure the extent of problems in health systems, propose and implement solutions, and establish a
research agenda for patient safety improvement at international level. We will promote research on
patient safety in Europe through an international conference PATIENT SAFETY: Research into
Practice.

The Luxembourg and UK Council of Ministers Presidencies in 2005 created a consensus for action in
Europe. An international conference on patient safety was held in London in November 2005, and
national ministries of health are engaged through the European Commission-coordinated High Level
Group on Health Services and Medical Care. The World Alliance for Patient Safety, established by the
World Health Organisation, brings together a wide range of stakeholders, including patient
organisations, professionals and industry as well as public bodies. The conference PATIENT
SAFETY: Research into Practice will be a focal point for promoting and disseminating research and
international action, strengthening broad-based initiatives and proposing evidence-based standards for
practice.

The conference will be led by the UK Faculty of Public Health and UCL College London, working
with the World Alliance for Patient Safety. In the setting-up period, the conference parameters – its
timing and place, expected numbers and broad themes – will be confirmed. There will be a Call for
Papers, to be presented in parallel sessions, a high-quality plenary programme and an active
communications strategy to international media. Outputs will include discussion of new measurement
methods, instruments and research designs, and exchange of experience on patient safety research
between international organisations and dissemination of new approaches. Furthermore, the conference
will provide a unique opportunity to build upon the current work of the WHO in setting global research
priorities, with the adaptation of research priorities to the European context.

PATIENT SAFETY: Research in to Practice will serve the international agenda of the World
Alliance, the agenda of EU member and associated states, and the interests of OECD and the Council
of Europe. The conference will have significant benefits to patients, practitioners and researchers, and
contribute to improvements in quality of health care and citizen health.

UCL took the task of delivering the scientific agenda, while the Faculty managed the
conference arrangements and the World Alliance contributed expertise links in Patient
Safety activities internationally.

An initial review of the patient safety research literature indicated that this is a field
which has had less development in many European countries compared with the
Anglophone world. USA, Great Britain and Australia have been particularly active in
research. The Conference, therefore, offered an important opportunity to engage
researchers across Europe and also Ministries of Health that are concerned with this
field. There was active support for the Conference from the ‘High-Level’ Working
Group for Health of DG Sanco, which represents Ministries.

Learning issues
Leadership of this second DG Research project provided insights for SPHERE. A
significant finding was the lack of coordination between Ministries at present on
patient safety research. Participants at the conference were both researchers and
officials. It was therefore planned to bring this issue forward for discussion within the
conference, so as to increase understanding between governments of their role, as well
as that of researchers. While the pharmaceutical industry provides significant support
to laboratory research, and is able to count the costs of this against product
development and therefore end-of-pipe drug prices, there is no inherent mechanism



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for financial support for patient safety research. Especially, studies of interventions
are not adequately funded.

A second consideration was how to take the agenda forward after the conference.
Here, there was the positive benefit of patient safety research issues having been
included in the second round of FP7 Health calls. Indeed, four different calls each
included aspects of patient safety. One call in particular asked to establish a patient
safety research network. Although the date of the conference was just after the closing
of the Call, it was agreed to publicise the Call on the Conference web-site, and to
encourage participants to look at the Call and develop collaborative research
proposals.

A third concern of the conference was how to promote intervention research. This is
a fundamental issue in public health research, and reflects the known problem of lack
of interest of researchers in undertaking research in the real world, and of policy-
makers in engaging researchers in their activities. Yet much arm-waving about the
extent, and hazards, of patient safety has not overcome this issue. Patient safety is a
good example of an important health field where a slow, systematic, multi-
disciplinary approach is needed which can have incremental effects, and for which
scaling-up is possible across countries. This is definitely programmatic research,
which needs funding and collective direction. The Patient Safety Research conference
therefore saw a major objective as setting out the research needs and challenging the
funding community to respond.


1.4    Public health research in Canada

The Canadian Institute for Health Services Research is a useful model of promoting a
particular area of public health research outside the mainstream (ie without specific
disease focus).
The four current research themes for HSR are:
    ⋅ Managing for quality and safety
    ⋅ Managing of the healthcare workplace
    ⋅ Primary healthcare
    ⋅ Nursing leadership organisation and policy

Four past themes were
   ⋅ Centralisation and aggregation of health service
   ⋅ Informed public participation in Decision-making
   ⋅ Health Human Resources
   ⋅ Managing Community
   ⋅ CIHR categorizes health research in four broad themes: bio-medical research;
     clinical research; research respecting health systems and services; and research
     into the health of populations, societal and cultural dimensions of health, and
     environmental influences on health. Definitions given by CIHR are included
     below.




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Bio-medical Research
Research with the goal of understanding normal and abnormal human functioning, at
the molecular, cellular, organ system and whole body levels, including development
of tools and techniques to be applied for this purpose; developing new therapies or
devices that improve health or the quality of life of individuals, up to the point where
they are tested on human subjects. Studies on human subjects that do not have a
diagnostic or therapeutic orientation.

Clinical Research
Research with the goal of improving the diagnosis, and treatment (including
rehabilitation and palliation), of disease and injury; improving the health and quality
of life of individuals as they pass through normal life stages. Research on, or for the
treatment of, patients.

Health Services Research
Research with the goal of improving the efficiency and effectiveness of health
professionals and the health care system, through changes to practice and policy.
Health services research is a multidisciplinary field of scientific investigation that
studies how social factors, financing systems, organizational structures and processes,
health technologies, and personal behaviours affect access to health care, the quality
and cost of health care, and, ultimately, Canadians' health and well-being.

Social, Cultural, Environmental and Population Health
Research with the goal of improving the health of the Canadian population, or of
defined sub-populations, through a better understanding of the ways in which social,
cultural, environmental, occupational and economic factors determine health status.
Within CIHR, one institute is the Institute of Population and Public Health (IPPH),
which “supports research into the complex interactions (biological, social, cultural,
environmental) which determine the health of individuals, communities, and global
populations; and into the application of that knowledge to improve the health of both
populations and individuals.” “Research includes but is not limited to:
    ⋅ health promotion policies and strategies (individual, community, and population
      based); related health outcomes research
    ⋅ health determinants - to elucidate the multi-dimensional factors that affect the
      health of populations and lead to a differential prevalence of health concerns
    ⋅ identification of health advantage and health risk factors related to the
      interaction of environments (cultural, social, psychological, behavioural,
      physical, genetic)
    ⋅ methods and practice; education, information management, communications
    ⋅ disease, injury and disability prevention strategies at the individual and
      population levels; identification and study of special populations (e.g. rural
      populations)
    ⋅ environment and health (e.g. radiation, contaminants, ecosystem and health, air
      quality)
    ⋅ socio-economic and cultural determinants of health (e.g. poverty, social status,
      access to services, literacy, community characteristics)
    ⋅ public and community health issues - surveillance, monitoring, information and
      data, laboratory studies (e.g. safe water)
    ⋅ workplace and occupational health research including physical, chemical,
      biological and organizational factors in the workplace

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    ⋅ health policy formation at community, regional, provincial, national and
      international levels; relation to health outcomes
    ⋅ basic methodology development (e.g. epidemiology, biostatistics, survey
      development, surveillance tools, tools for risk evaluation, risk perception,
      modeling complex interactions)
    ⋅ multiple interventions research to determine the best combination of
      interventions, providers, and conditions to address population health issues
    ⋅ underlying mechanisms through which social and physical environments
      influence human biology
    ⋅ development and implementation of health technologies and tools (e.g.
      surveillance technologies, detection devices, database design)
    ⋅ toxicology
    ⋅ ethics issues related to population health (e.g. poverty, exposure to hazards)”

Lomas et al (2003) report from two countries (Canada, UK) ‘listening’ processes with
researchers. They found challenges in distinguishing between priority issues and
priority research themes. This is partly because researchers know more about their
own subject, and give it precedence, whereas the process of deliberation on priorities
should give equal initial consideration to each issue. Moreover, there will be
differences of opinion on what issues are researchable.
J Lomas, N Fulop, D Gagnon, and P Allen. On Being a Good Listener: Setting
Priorities for Applied Health Services Research. Milbank Quarterly. 2003, 81 (3)
363-381.


1.5    Public health research in Australia

The Australian Government’s main source of health and medical research funding.
The National Health and Medicine Research Council is a key contributor in providing
evidence for the development of health policy, improving health care and applying
knowledge generated through research to prevent and effectively manage the burden
of disease.
http://www.nhmrc.gov.au/about/committees/rc/_files/researchbro.pdf

Details of the programme are not clear, but Figure1 below shows that there is a small
but growing proportion of health research aimed at public health (13.4% in 2005/6 for
public health research and 3.4% for health services research). The Table 3 below
also shows funding allocations across areas of public health interest, although the
actual level of research (eg laboratory, clinical or population) is not specified.




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2.0      AHRQ Health Services Research
Release Date: June 22, 2000

2.1      Research Objectives:

AHRQ seeks research on a wide range of topics under the Priority
Program Areas:

      ⋅ Supporting Improvements in Health Outcomes;
      ⋅ Improving Quality and Patient Safety; and
      ⋅ Identifying Strategies To Improve Access and Foster Appropriate Use and
        Reduce Unnecessary Expenditures.


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AHRQ is especially interested in projects across its program areas that demonstrate
innovative strategies for effecting systemic and sustained behavior changes to
improve outcomes, quality, access, cost, and use, and document the impact of changes
at systems, state, and community levels.

2.2       Priority Program Areas

Supporting Improvements in Health Outcomes

Interests include:

      ⋅ Effectiveness and cost effectiveness of clinical and organizational interventions,
        including trials;
      ⋅ Assessment of the impact of diagnostic and other health care technologies on
        cost and patient outcomes;
      ⋅ Development and testing of practical, ready-to-use outcomes measures
        addressing functional status, quality of life, and severity and risk adjustment, as
        well as general measurement issues;
      ⋅ Evaluation of strategies for collection, analysis and presentation of data, and
        real-time incorporation of outcomes and evidence into decision-making for
        patients, providers, and policy-makers;
      ⋅ Development, validation and use of measures that incorporate patient values and
        preferences;
      ⋅ The relationship between processes and outcomes of care, including timing of
        services;
      ⋅ Measures for outcomes, effectiveness, and cost effectiveness of clinical
        preventive services for all ages;
      ⋅ Analysis of the causes of variations in clinical practice;
      ⋅ Observational studies to answer discrete questions related to the outcomes,
        effectiveness, cost, cost-effectiveness or quality of medical care; and
      ⋅ The impact of models of undergraduate, graduate, and continuing education on
        the knowledge, skills, and attitudes of providers and associated patient
        outcomes.


Improving Quality and Patient Safety

Quality Measurement and Improvement.

      ⋅ Innovative approaches to measuring quality, including the perspectives of
        providers, patients, and consumers;
      ⋅ Methods to identify, understand the causes of, and prevent medical errors and
        improve patient safety;
      ⋅ Impact of comorbidities on measurement of quality of end-of-life care;
      ⋅ Risk and severity adjustment, and methods for measuring functional status and
        quality of life;
      ⋅ Evaluation of the kinds of quality improvement systems that promote systemic
        and sustainable changes in clinical practice to improve the quality of care;



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   ⋅ Evaluation of the appropriateness of different data sources for quality
     measurement, and development and evaluation of methods for using data to
     improve quality of care;
   ⋅ Information technology applications on improving quality of care;
   ⋅ Methods for changing the behavior of clinicians, provider institutions,
     employers, plans, and patients to improve quality of care and patient safety;
   ⋅ Integrating quality measurement and improvement and patient safety into
     office-based, worksite-based, and primary care settings, as well as acute and
     long-term care settings;
   ⋅ Delivery of clinical preventive services (CPS) in primary care;
   ⋅ Studies of the impact of public policy, and organizational and financial
     arrangements, on health care quality at the national, State, and subpopulation
     levels; and
   ⋅ Research on patient and consumer issues.


Evidence-based Practice.

   ⋅ systematic reviews of evidence;
   ⋅ Methods to implement evidence-based information and tools in diverse health
     care settings;
   ⋅ Evaluation of specific evidence-based guidelines;
   ⋅ Studies of the cost effectiveness/cost benefit of important new or existing health
     care technologies;
   ⋅ Assessment of the extent to which evidence-based information is used;
   ⋅ The role of informatics in dissemination of evidence-based information, and its
     impact on patient and clinician behavior; and
   ⋅ The role of evidence-based information in the development of informatics tools
     and information sources.

Clinical Preventive Services.

   ⋅ Interventions to address patient barriers to preventive care;
   ⋅ Interventions to improve quality of screening services;
   ⋅ Interventions to reduce overuse of services, target interventions more effectively
     to high-risk groups, or reduce adverse effects and costs of screening;
   ⋅ Preventive counseling interventions that have greatest impact on behavior
     change; and
   ⋅ Interventions to improve patient involvement in preventive care.


2.3    Identifying Strategies to Improve Access, Foster Appropriate Use, and
Reduce Unnecessary Expenditures


Access, Costs, and Use of Health Services.

   ⋅ Studies that use AHRQ data sources to assess the cost and utilization of health
     resources;



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     ⋅ Impact of the trends in health care prices, costs, and sources of payment for
       services on access, expenditures, and outcomes;
     ⋅ Measure health care costs and to organize and analyze data on costs by clinical
       condition, sociodemographic factors, site of care, and payment sources;
     ⋅ Studies to increase enrollment in public insurance (e.g., Medicaid, SCHIP);
     ⋅ Assessment of strategies to improve access, especially for underserved
       populations;
     ⋅ Models to simulate and understand behavior governing the use, cost, financing,
       and organization of care.

Organization, Financing, and Delivery

     ⋅ Impact of purchasing activities by employers, coalitions, and governments;
     ⋅ Impact of major changes in public programs and health care markets;
     ⋅ Impact of changes in financial and legal arrangements such as consolidations,
       conversions to for-profit status, development of national ownership links among
       facilities, new relationships among acute, subacute, and long-term care
       facilities;
     ⋅ Impact of the movement of care from inpatient to outpatient settings, and from
       nursing homes to home care;
     ⋅ The effects of disease management and "carve-in" and "carve-out" arrangements
       on health care costs, accessibility, and quality of care, particularly for persons
       with chronic conditions;
     ⋅ Studies of the impact of clinical integration on access, quality, and cost of care;
     ⋅ Evaluations of new staffing and other clinic-level configurations in improving
       access, quality, and cost of care, information technology applications;
     ⋅ The role of nonfinancial incentives and organizational characteristics, such as
       organizational structure and culture, in affecting the behavior of health care
       organizations and units and individuals within them;
     ⋅ Evolving definitions of medical necessity used by managed care organizations
       to determine when and under what circumstances services will be covered.

Primary Care Practice.

     ⋅ Characteristics of primary care practice that lead to improvements in outcomes
       and quality of care;
     ⋅ Effective models of organizing, financing, and managing primary care services;
     ⋅ Factors that influence access to primary care services, including socioeconomic,
       cultural, and geographic factors;
     ⋅ Optimal delivery of health care, including primary care services, in low-income
       inner-
     ⋅ city and rural areas;
     ⋅ Access to and availability of clinical preventive services;
     ⋅ Effects of information technology applications in primary care practice;
     ⋅ Clinical decision-making in primary care, including an emphasis on facilitating
       shared patient-clinician decision-making;
     ⋅ Strategies for integrating quality measurement and improvement into office-
       based, worksite-based, and primary care settings;



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      ⋅ Strategies for reducing medical errors and improving patient safety in office-
        based, worksite-based, and primary care settings;
      ⋅ Strategies for facilitating the integration of research findings into office-based,
        worksite-based, and community primary care practices;
      ⋅ Improving the quality, value, and access to health care for American workers
        and individuals with disabilities;
      ⋅ Effective strategies in primary care settings for eliminating racial and ethnic
        disparities in health-related outcomes;
      ⋅ Issues related to the outcomes, costs, and delivery of primary care services to
        the elderly;
      ⋅ Improved care for those at the end of life;
      ⋅ Organizational and other factors affecting the cost and quality of transitions
        between ambulatory and other settings, including home, hospital, and long-term
        care settings;
      ⋅ Health care workforce organization, including communication and coordination
        of services among primary care clinicians and other members of the health care
        team;
      ⋅ The readiness of the health care system, in particular its entry points such as
        emergency rooms and primary care, to recognize and respond to the effects of
        exposure to agents of biological or chemical terrorism.

2.4       Emerging Research Interests

Two additional areas of health services research that have become increasingly
important in today"s rapidly changing market-driven delivery system are research on
methodologic advances, especially cost-effectiveness analysis (CEA) and research on
ethical issues, which
may be related to decisions based on cost effectiveness, but which also cut across the
spectrum of health care delivery.

Interests include:

Cost-Effectiveness Analysis (CEA)

      ⋅ Production of standardized analytical components (e.g., cost components,
        general population health profiling, national health utility index, and incidence-
        based illness burdens) to facilitate the comparability of CEA findings;
      ⋅ Exploration of the use of CEA as a framework for guiding decisions, both
        clinical and organizational;
      ⋅ Systematic reviews, meta-analyses, and other methods that enhance the
        generalizability of clinical and other research for application to practice.

Ethical Issues raised by changes in the health care delivery system

      ⋅ Studies on ethical issues across the spectrum of health care delivery, including
        equity in access to all levels of care;
      ⋅ Studies on the impact of genomics on the organization and delivery of health
        services;




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     ⋅ Studies on changing values regarding the provision of care, from the provision
       of all possible care without cost considerations, to the provision of less costly
       care;
     ⋅ Studies to emphasize and clarify tradeoffs related to resource allocation and the
       tension between individual and population or societal needs.




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3.0 Research Priorities for the Agency for Healthcare
Research and Quality
Release Date: December 29, 2005
Issued by Agency for Healthcare Research and Quality (AHRQ),
(http://www.ahrq.gov)
The mission of the Agency for Healthcare Research and Quality (AHRQ) is to
improve the quality, safety, efficiency, and effectiveness of healthcare for all
Americans. AHRQ achieves this mission by supporting a broad program of health
services research and by working with partners to promote improvements in clinical
and health systems practices, including the prevention of diseases and other health
conditions.

In FY2006, AHRQ plans to emphasize research gaps regarding the care of individuals
with multiple health conditions. While many studies have focused on the efficacy and
effectiveness of disease-specific interventions, there has been limited work that
addresses the unique needs of sicker patients – those with multiple co-morbid
conditions and those in need of multiple risk-behavior interventions.

From the perspective of the chronically ill, sicker patient and their care givers, the
health system does not appear patient-centered or coordinated. In a recent
Commonwealth Fund study of sicker adults in six countries, many of the problems
related to care of these patients appeared universal, though there were some issues
unique to the United States . While most of the sicker adults had seen multiple
physicians and were taking multiple medications, 53 percent of patients reported
taking 4 or more medications and 43 percent of patients reported 4 or more
physicians. In addition, patients in the U.S. were least likely to have the same
physician for five or more years.

Development and evaluation of new approaches to promote patient-centered care as
well as projects that expand and evaluate the use of programs previously found to be
promising in select settings and circumstances are encouraged.

Specific research areas could include the following:
   ⋅ Approaches to providing coordinated, patient-centered care to individuals with
     multiple co-morbid conditions over time and in multiple health care settings.
   ⋅ Strategies for the assessment and treatment of multiple high risk health
     behaviors (including lack of physical activity, unhealthy diet, and tobacco use)
     and providing multiple evidence-based preventive services in primary care
     settings.
   ⋅ Optimal methods of organizing health care teams in primary care, including the
     roles of various health professionals in the care of patients with multiple co-
     morbid conditions; implications for medical education and health professions
     training.
   ⋅ The short- and long-term financial implications of providing coordinated,
     patient-centered care to individuals with multiple health conditions, including
     at-risk populations, such as the near-elderly and Medicaid populations.
   ⋅ Translating effective research strategies to improve chronic illness care into
     cost-effective health system improvements.


                                                                                   15
Due to limitations on available grant funds for fiscal year 2006 AHRQ will maintain a
limitation on grant funds on large research grant applications to $300,000 total costs
(direct and indirect) per year and $100,000 total costs per year for large conference
grant applications.




16
4.0 Public health research in the USA: what can Europe
learn?
The European Commission’s Directorate-General (DG) for Research is preparing its
seventh framework programme of research, from 2007 to 2013 and with a proposed
enlarged budget. Health is the lead topic of nine themes in the Proposal being laid
before Parliament and the Council 1, 2. The current (sixth) European Union research
programme for gave prominence to biomedical laboratory sciences, especially
genomics, and relegated broader health research to a sub-theme among policy-related
research3, 4. What can be learned by looking across the Atlantic?

This is a report on the three United States (US) agencies that fund public health
research, and a commentary on applications in the EU. In this context, public health
research indicates the same broad field as those published in European public health
journals - including health services research, prevention, health protection and disease
control through population-level interventions. Each agency is a part of the US
Department of Health and Human Services: they are thus accountable to Congress
through the Health Secretary, who is accountable to the US people for their health.



4.1    Agency for Healthcare Research and Quality (AHRQ)

AHRQ is the smallest of the three agencies funding health research. It was
established in 1998, with the mission to ‘improve the quality, safety, efficiency and
effectiveness of care for all Americans’. (AHRQ was created out of the ashes of a
previous agency, the Agency for Health Care Policy and Research which had its funds
withdrawn by Congress after it had disseminated a report that US orthopaedic
surgeons were doing back operations which were not supported by evidence of
effectiveness. The drama showed the political strength of medicine in the US and the
limitations of regulatory advice.) Funds from Congress are negotiated annually, and
there is a National Advisory Council of the top-level sponsors.

AHRQ addresses research on health care services and systems from perspectives of
effectiveness, efficiency and equity5. AHRQ is concerned with effectiveness – what
happens in everyday practice – rather than efficacy – what happens under ideal
circumstances, for example in a trial. AHRQ uses scientific methods and disciplines
to investigate human-created health services, and therefore draws on a range of social
and statistical sciences as well as medical and epidemiological methods.

Many of the programmes have national coverage, and most are developed through
stakeholder consultation and competitive tendering by research institutions. AHRQ
the primary source of funding for US healthcare researchers, both universities and
private research groups (for example, working within the larger health insurance
companies), but also works with partners, including public and private insurers, and
non-profit foundations, for funding. Support for quality is interpreted broadly, and
uses several approaches. These include national surveys, clinical guidelines,
collaborative networks, information systems and dissemination.



                                                                                     17
The Medical Expenditures Panel Survey6 is unusual in being managed in-house: it is a
national rotating panel sample of approximately 15000 households, and provides
evidence on insurance cover, health care expenditures, health services use and health
status. These data are periodically supplemented with extra dimensions, and there
have been complementary validating surveys of health providers – hospitals, primary
care and pharmacies. Healthcare administration data for community hospitals are
recorded in a national survey, and methods have been developed for recording
consumers’ views of health care insurance plans.

Evidence for clinical practice, including use of pharmaceuticals, new technology and
devices, forms a politically sensitive area of work. AHRQ commissions literature
reviews and syntheses, prioritising on criteria of cost, disease burden and use. The
work has a broader approach than the Cochrane Collaboration, and AHRQ intends to
set up an Eisenberg Centre for clinical decision science. The US Preventive Service
Taskforce reviews the evidence of effectiveness and develops recommendations for
prevention in primary care7. There is also support for systems to monitor both
population effectiveness and adverse events, and registers for rarer diseases.

AHRQ supports networks of researchers and encourages partnership between
researchers, providers and insurers, and other federal health agencies. There are
primary care-based networks both for physicians and for research on delivery
systems, and support for research on patient safety. There is also research capacity
building through support to institutions and individuals for training; Harkness fellows
have also found successful placements within the Agency. And there are well-
developed communications to a range of users including clinicians, managers, policy-
makers and politicians.

This wide range of activities reflects the importance of the health care sector in
American life. More than 14% of all economic activity in the USA is health care, yet
these resources are not used optimally: there are wide variations in clinical practice
compared with quality standards, and there are variations in health utilisation. The
annual National Health Quality and Disparities reports, drawing on the wealth of
survey data, provide important evidence for policy improvement and implementation.


4.2    National Institutes for Health (NIH)

The National Institutes for Health are a large grouping within part of the Department
of Health and Human Services. The annual budget has doubled over the past six
years, and currently stands at over 27 billion in 2004. 27 institutes have been
established since the first, the National Cancer Institute in 1937. NIH funded over
80,000 research grants and projects in 2003, taking about half the total budget, while
10% of the budget is allocated to clinical trials, and 3% to research training. 6000
researchers work directly on campus at NIH.

The dominant paradigm of NIH is laboratory research, investigating cells in health
and disease at molecular level. This bioscience is linked to pharmaceutical
applications, and NIH also supports clinical trials of drugs across the full range of
diseases. Dissemination of research knowledge to users is an important goal, and of
necessity must inform political and professional supporters of its role.


18
Recently, NIH Director published a “roadmap for medical research”8. Three broad
themes (which cut across the traditional disease-based approach) are proposed:
molecular/cell research; clinical intervention research; and integrated interdisciplinary
research teams.

It is difficult to find a public health perspective amongst all the bioscience - perhaps
surprising, since the stated objective of NIH is to increase knowledge of how to
improve human health. A small Office for Disease Prevention9 within NIH has a
coordinating role across the institutes, and links to other DHHS agencies including
AHRQ and CDC. This group also tracks research in areas including health education,
community-based interventions and health information. The National Cancer
Institute, for example, funded both a community intervention randomised trial of
smoking cessation and a parallel observational trial of demonstration projects.

But the various public health studies within the institutes are not brought together, and
NIH lacks a clear research direction for research on health behaviour, social
determinants and public policy. Recently, in the face of the burgeoning epidemic of
obesity, NIH has created a cross-institutes Obesity Task Force10, which has collated
evidence from behavioural and epidemiological research as well as cellular and
clinical research across the institutes (although these were not originally
programmatic or joined conceptually). Such overviews can help define important
opportunities for public health research and translation into practice.

NIH proposes that part of the reason for the lower support for clinical research
compared with laboratory research is that the applications for clinical research are of
poorer quality. This may be either false (eg, a perception of laboratory researchers
who do not accepts standards of clinical research methods) or true (eg, clinicians
working in the practice of medicine have less time than laboratory scientists to write
and develop good research protocols). Equally, it may be a function of the funding
offered. Raising the level of behavioural and epidemiological research funded by NIH
may give a greater contribution to turning the tide on the major health problems of
America today.


4.3     Centers for Disease Control

CDC is the DHHS agency best known by the general public – both in Europe and the
USA - because of its profile in infectious disease control: for example, publicity
during the SARS alert and its role in international health. Yet CDC has a broader
remit than infections alone, which it describes with the words ‘health protection’: and
these are the same words (‘highest level of human health protection’) used in the
European Union treaties. Under the rubric ‘Safer Healthier People’ CDC has two
broad goals:
    ⋅ Preparedness – people will be protected from infectious, occupational,
      environmental and terrorist threats
    ⋅ Health promotion and prevention of disease, injury and disability – to achieve
      high quality of life, in every stage of life and especially related to health
      disparities.




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The ‘centres’ were re-formed in 2004 into six organisational groups: information,
infectious diseases, health promotion, environment, security and global health. CDC
actively recognises its wide range of stakeholders and partners – the public, health
professionals, education, business, public health systems and federal agencies.

CDC has consistently ensured links and leadership with public health departments
responsible for health protection at state, county and municipal levels. Two examples
within a range of programmes are:
Steps to a Healthier US. Within the national ‘Healthier-US’ programme11, CDC has
set up five-year funding agreements with states, cities, and tribal entities to implement
chronic disease prevention for diabetes, overweight, obesity, and asthma and address
related risk factors of physical inactivity, poor nutrition, and tobacco use.
Prevention Research Centers12. A network of 33 academic departments and
communities working together in research on preventing chronic diseases and
improving quality of life in areas as geographically distinct as Harlem, the Southwest,
and Appalachia, and across cultural and age groups.

As part of futures thinking, CDC has established a new approach to research. An
internal review recognised that research was: frequently led by individual Centres
rather than across CDC; relatively low-risk research; limited in scope; without
adequate peer review; more often intra-mural than externally sponsored; and with
insufficient attention to dissemination13. An impetus for change has been the call by
politicians for more ‘translational’ research, to identify knowledge that can be used in
practice. CDC has established an Office of Public Health Research which is actively
developing a framework for public health research for the next decade, and consulting
widely both inside and outside the agency14.

The process has identified five broad themes for research, and also significant support
issues. The latter include: concern to retain areas of excellence in CDC work, for
example in control of preventable but dangerous diseases such as rabies; to support
development in new relevant fields, particularly the social determinants of health and
partnerships with public health practice; to promote workforce capacity and synergy
with other science endeavours (eg biotechnology); and to develop information
technology and systems science. The work is also assessing an impact index based on
criteria of health need, strength of evidence and capability for implementation.

The matrix of the five research themes reflects the goals of CDC – for people, places,
preparedness and global health, as well as cross-cutting/methodological areas. There
are approximately 50 sub-themes, ranging from public health genomics to frontline
response preparedness, each defined with a heading and broader text. The themes
recognise the need for social and psychological research methods as well as
epidemiological and laboratory methods, and propose research in three categories –
understanding the problem, defining solutions and implementing practice. .

As a pilot, CDC has chosen to test four interdisciplinary issues. Termed ‘trailblazers’
themes are: obesity, adolescents, preparedness and influenza. CDC leadership hopes
new partnerships will develop around these issues, and that they will also offer early
wins in application. In support of research on these issues, as well as broader
determinants of health, CDC is seeking partnerships with other federal agencies,
including departments for agriculture, food safety, transport and law enforcement.


20
4.4    Discussion

While health research policy is moving towards cross-disciplinary programmes,
including population health improvement, budgets remain strongly directed towards
biomedicine. NIH has an annual budget of $27bn compared with $280 million spent
by AHRQ and $600 million by CDC. To maintain appropriations from Congress,
each agency is seeking to demonstrate relevance to the national health needs and to
indicate how research can be used for practice. For NIH, this process has traditionally
centred on basic research with applications in the development of drugs, and
dissemination of evidence from clinical trials to health professionals and the public.
AHRQ provides evidence on health expenditures (used by the insurers, providers,
employers and the public) and measures of quality of care. CDC has a new initiative
to coordinate research across its centres, and works with state-level public health
services.

In European Union, research has been a growing arm of policy in support of the
Lisbon Declaration, which seeks ‘to make Europe the most dynamic and competitive,
knowledge-based economy in the world, capable of sustaining economic growth,
employment and social cohesion’. Biomedical research received substantial funding
in the sixth Framework Programme, and support through this for the pharmaceutical
industry; but broader health research was separated off into a small sub-theme of
‘policy-related research’. But health, more than biomedicine, is increasingly on the
European political agenda, supported by the Treaty of Amsterdam text, and because
concern of the accession countries’ concerns for their comparatively poorer levels of
population health and health services.

Within member states, research may be funded directly by an institution or
commercial company; through investigator-initiated applications; or in response to
defined calls. Laboratory scientists prefer open competitive research funding, which
allows them to make incremental studies within their own research pathway, while
administrations prefer goal-oriented research in relation to applications and social
objectives. The EU research programme is based on calls, with limited opportunities
for investigator-initiated research. Also, the requirement for cooperation across
institutions and countries means that research studies are managed by committees
rather than by individual investigators. Ministries of health (or national boards of
health) support some public health research in most European countries, but there are
limited links between public health research and broader sciences, and public health
researchers have fewer international links than biomedical researchers.

The National Institutes of Health, formally a part of the Department of Health and
Human Services, has built its strong biomedical science capability in Bethesda, close
to the politicians in Washington DC, and has achieved an effective lobby for medical
science which pays dividends in a steadily rising federal appropriation. The
pharmaceutical industry plays an important part in supporting basic and translational
research, but there are respected charitable funds also support applied health research.
AHRQ, for health services research, (also based near Washington), and CDC, for
health protection research, (in Atlanta, Georgia) are much small agencies, but
nevertheless nationally recognised and actively support research capacity and research
agendas. Other influential partners include the Veteran’s Administration (for ex-
servicemen and their families), the Centers for Medicare and Medicaid Services


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(which fund services for low-income groups, especially children and elderly), and
think-tanks including the Institute of Medicine (providing authoritative topic reports)
and Research!America (an NGO alliance specifically aimed at supporting health
research).

In the EU, by contrast, most science is nationally funded. National officers
responsible for health research do not meet routinely, and may not even know each
others’ research portfolios. The European Commission administers the research
budget from Brussels with a small administrative staff, and limited opportunities for
consultation with scientists and policy development. The European Research Area, a
new concept in DG Research’s sixth framework programme, could link nationally-
based research organisations, and is a pragmatic approach to increasing cooperation
and size of delivery: health research needs to embrace collaborative working and
integrated programmes if it is to achieve Europe-wide impact. But European health
research, while a leading dimension of DG Research’s programme, does not have the
size or profile of health research within the US Department of Health and Human
Services. And expenditure on health by DG Research is separate from the (smaller)
budget of the health unit in DG Health and Consumer Safety.

Might Europe develop along similar lines to the USA? The European Centre for
Disease Control, funded by DG Health from May 2005, has a name similar to its US
counterpart, but is itself much smaller and as yet no research capability. There is as
yet no equivalent for AHRQ in Europe, although there is an increasing interest in
comparing impacts of insurance funding, especially for cross-border care; perhaps the
European Observatory for Health Care Systems15 could develop in this direction.
There is also no equivalent to NIH, since science research is mainly supported
member states; perhaps a European Science Council, proposed for the seventh
research programme1 or the European Science Foundation16, which is a meeting point
for scientists in national research administrations, may develop stronger interests in
health research.

What are the lessons for Europe? Health research – that is, research that is relevant to
today’s major health problems, through disease control and health protection –
requires active nurturing, broad participative support and programmatic direction.
Close attention should be given to the balance between laboratory, clinical and
population research, and also between foundational and translational research across a
wide range of relevant disciplines – biomedical, psycho-social, and cultural-political
sciences. Much more knowledge and exchange on health research is needed between
member states, and collaborative studies that draw on the variations and experiences
of health policies in different member states.

There could be closer links between the health objectives of DG Health and Consumer
Safety and the WHO European Regional Office, and more transparency in advice
from stakeholders, including public representative organisations. The EU and the
USA could develop stronger mechanisms to consult on health research agendas and
promote transfer of knowledge into public health policies. And not least, member
states could develop their responsibilities for supporting national programmes of
research, and implementing science findings for the better health of their citizens.




22
5.0    References
1. European Commission: COM(2005) 119 Final (6.4..2005):
 http://europa.eu.int/eurlex/lex/LexUriServ/site/en/com/2005/com2005_0119en01.pdf

2. McCarthy M. What priorities for European health research? Eurohealth 2005; 12:
no 2, forthcoming.


3 McCarthy M. Public health in the new European Union research programme.
Journal of Epidemiology and Community Health 2003; 57: 236-237.

4. Saracci R, Olsen J, Hofman A. Health research policy in the European Union.
British Medical Journal 2005; 330: 1459 - 1460.

5.           Agency       for       Healthcare       Research       and       Quality:
http://www.ahrq.gov/about/profile.htm

6. Medical Expenditures Panel Survey: http://www.meps.ahrq.gov

7 Agency for Healthcare Research and Quality. US Preventive Services Task Force:
http://www.ahrq.gov/clinic/uspstfix.htm

8. US Department of Health and Human Services. National Institutes of Health.
Overview of Research Activities. NIH, Bethesda, MD, 2004.

9. National Institutes of Health, Office of Disease Prevention: http://odp.od.nih.gov/

10.     National     Institutes     of     Health       Obesity      Task       Force:
http://www.obesityresearch.nih.gov/about/strategic-plan.htm

11. US Department of Health and Human Services, Healthier-US programme:
http://www.healthierus.gov/

12. US Department of Health and Human Services, Centers for Disease Control:
Prevention Research Centers. http://www.cdc.gov/prc

13. US Department of Health and Human Services, Centers for Disease Control,
Office of Strategy and Innovation. Public Health Research Work Group (Internal
Report). US DHHS/CDC, Atlanta, 2004

14. US Department of Health and Human Services, Centers for Disease Control.
Office of public health research: developing the CDC-wide research agenda.
http://www.cdc.gov/ophr/cdcra.htm

15. European Observatory on Health Systems. http://www.euro.who.int/observatory

16. European Science Foundation: http://www.esf.org




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