DNVF Memorandum Participatory Health Services Research (Part 1)

Pragmatic Trials and Improving Long-Term Care: Recommendations From a National Institutes of Health Conference.

BackgroundEvidence supports that engaging consumers in developing and co-designing research priorities and protocols with key stakeholders improves acceptability of and participation in research and leads to better health outcomes. This is particularly relevant when considering research with First Nations, migrant and refugee populations, adolescents, women living with disability and those in the LGBTQIA + community who face systemic disadvantage, shouldering a disproportionate burden of poor outcomes. This study aimed to identify priorities for maternal health research in the Top End of the NT from the perspective of consumers and key stakeholders.MethodsUsing a participatory approach, focus groups and in-depth discussions with consumers, maternal health care providers and stakeholders were conducted over a three-month period (Part A), followed by a 1-day stakeholder forum in Darwin (Part B). Data was triangulated and a list of research priorities developed.ResultsFive priorities emerged. First, there is a need to develop and test strategies removing barriers for engagement of consumers and clinicians in maternal health research. Second, research into specific clinical concerns raised by consumers, such as prevention of preterm birth, must be complemented by health systems research enabling better patient journeys. Third, there is a need to develop and test innovative tools to enable comprehensive counselling of women from diverse backgrounds regarding aspects of care, based on most recent evidence-based and consumer needs. Further, there is a demand for research into innovative approaches to recruitment and retention of maternity care providers in a sparsely populated region of Australia, with a focus on provider well-being and continuity of integrated care. Finally, a need for research collaboration across similar settings and relevant disciplines to enable enhanced maternal health was identified.ConclusionsEmerging research priorities, implementing evidence-based practices, and regularly updating these priorities through ongoing stakeholder engagement, can work towards a future where maternal health services are accessible and responsive to the diverse needs of women and families residing in the Top End of the NT.Whilst consumers and stakeholders raised specific clinical priorities, health system research was identified as a key priority, focussing on patient journeys, co-design, and continuity of care through staff retention.Supplementary InformationThe online version contains supplementary material available at 10.1186/s12913-025-13127-4.

"Health services research is a field of inquiry that examines the impact of the organization, financing, and management of health care services on the delivery, quality, cost, access to, and outcomes of such services." This organizational definition, from the Association for Health Services Research (AHSR; membership services, personal communication), is a new buzz word in the current era of health care reform. Radiologists will be asked or expected to become active participants in this field. If they do not take part, they will be shut out of important policy making. The process and outcome of this research often determine whether examinations and procedures will be reimbursed in the future and at what level. This article addresses the particular need for trained health service researchers in radiology, opportunities for formal research training, and available sources of funding for health services training and research. It is not intended to be a definitive resource for those wishing to enter this field; rather, it provides a foundation for beginning pursuit of this evolving academic discipline.

Practice: To avoid unintended harms, cancer screening efforts should be tailored to the characteristics of individuals, and efforts should be directed to informing those who should avoid screening as well as those who might benefit from screening. Policy: Cancer screening guideline developers should consider the potential for harmful unintended consequences when cancer screening is not targeted to the characteristics of individual patients. Research: Funding mechanisms are needed to continue to support independent health services research to optimize appropriate use of cancer screening in clinical practice. The Veterans Health Administration (VHA) has many unique strengths, such as its national electronic medical record and large clinically rich databases, which make it an ideal system for conducting health services research to improve patient care nationally. Health services research examines how people access health care, how much care costs, and what happens to patients as a result of this care under everyday conditions [1]. For several reasons, it has generally not been considered “translational behavioral research.” First, most translational research focuses on the development and implementation of interventions. In contrast, most health services research takes a broader view by studying the real-world use and outcomes of interventions to affect changes in current practice. Second, translational behavioral research has traditionally focused on increasing the use of interventions in clinical practice, such as increasing the use of cancer screening. In contrast, a core task of health services research has been to identify problematic clinical practices in which interventions are not appropriately targeted to the patients for whom they are intended. These approaches can be at odds when the push to increase the use of an intervention causes a high uptake among patients in whom the harms likely outweigh the benefits. For example, efforts to increase cancer screening may increase screening among patients with advanced age and severe comorbid illness [2]. Third, research focused on discovering the harms of interventions in every day practice is generally more difficult for health system leaders to accept than research to broadly implement new interventions. However, VHA has been an unwavering leader in health services research that evaluates the appropriate use of interventions and informs patients and clinicians about the real-world benefits and harms of interventions.

© 2020 AHHA Open Access. Objective: This study reports on the characteristics of individuals conducting health service research (HSR) in Australia and New Zealand, the perceived accessibility of resources for HSR, the self-reported impact of HSR projects and perceived barriers to conducting HSR. Methods: A sampling frame was compiled from funding announcements, trial registers and HSR organisation membership. Listed researchers were invited to complete online surveys. Close-ended survey items were analysed using basic descriptive statistics. Goodness of fit tests determined potential associations between researcher affiliation and access to resources for HSR. Open-ended survey items were analysed using thematic analysis. Results: In all, 424 researchers participated in the study (22% response rate). Respondents held roles as health service researchers (76%), educators (34%) and health professionals (19%). Most were employed by a university (64%), and 57% held a permanent contract. Although 63% reported network support for HSR, smaller proportions reported executive (48%) or financial (26%) support. The least accessible resources were economists (52%), consumers (49%) and practice change experts (34%) researchers affiliated with health services were less likely to report access to statisticians (P < 0.001), economists (P < 0.001), librarians (P = 0.02) and practice change experts (P = 0.02) than university-affiliated researchers. Common impacts included conference presentations (94%), publication of peer-reviewed articles (87%) and health professional benefits (77%). Qualitative data emphasised barriers such as embedding research culture within services and engaging with policy makers. Conclusions: The data highlight opportunities to sustain the HSR community through dedicated funding, improved access to methodological expertise and greater engagement with end-users. What is known about the topic?: HSR faces several challenges, such as inequitable funding allocation and difficulties in quantifying the effects of HSR on changing health policy or practice. What does this paper add?: Despite a vibrant and experienced HSR community, this study highlights some key barriers to realising a greater effect on the health and well-being of Australian and New Zealand communities through HSR. These barriers include limited financial resources, methodological expertise, organisational support and opportunities to engage with potential collaborators. What are the implications for practitioners?: Funding is required to develop HSR infrastructure, support collaboration between health services and universities and combine knowledge of the system with research experience and expertise. Formal training programs for health service staff and researchers, from short courses to PhD programs, will support broader interest and involvement in HSR.

This pilot study sought to identify motivators and barriers to participating in a longitudinal survey; we interviewed patients and practitioners at a multidisciplinary primary care clinic where the proposed project would be based. While altruism motivates participation in medical research, we found that for many potential participants, the opportunity to benefit directly was the primary, and sometimes the only motive to participate or encourage participation in the research project. Patients often wanted direct feedback from their individual results, and they expected to provide consent before the results were forwarded to other parties such as their practitioners. Similarly, some practitioners were more likely to support the project if participation benefited patients directly. Other factors were also identified that influenced the acceptability and perceived risks and benefits of participating. More work is needed to understand these motivators and how patients might benefit directly from participating in health services research, especially when direct medical benefit is not possible.

BackgroundPhotovoice is an innovative community-based participatory research methodology that uses photography to capture key issues in a local setting. In Photovoice, photographs are taken to record and reflect on community strengths and challenges, facilitate critical dialogue among participants and researchers, and reach various stakeholders to make change. Although the use of Photovoice has increased in recent years, its utilisation in health policy and systems research is still limited.Main bodyIn this article, we give an overview of the use of Photovoice in health systems research based on literature including methodological considerations, ethical concerns, benefits, and challenges. The Photovoice methodology is based on three theoretical underpinnings: empowerment education theory; feminism and notions of voice; and documentary photography. Photovoice provides power to the participants to share their own insights hence amplifying community voices. Adequate training of Photovoice participants is crucial including on consent for taking and use of photographs. Keeping Photovoice participants engaged throughout the research process and the time commitment required are key challenges of the methodology. The article ends by providing an illustrative example of a study that used Photovoice to explore the roles of community health workers (CHWs) from their perspective in Wakiso district, Uganda. Through Photovoice, CHWs were able to reflect on their day-to-day activities, which methodology can be used among other cadres and settings to inform practice, policy and programming.ConclusionsPhotovoice is a feasible, appropriate and empowering approach in health policy and systems research.

Commercial interests in health care have begun to affect the contents of some medical research reports in a way that could interfere with the essential function of medical journals. Recently I was asked to review a manuscript submitted for publication to Pediatrics , investigating the application of a proprietary clinical scoring system in a pediatric population. Basic information was withheld because of its proprietary nature, such as the identification of clinical variables, values of normal age-related ranges, as well as the equations relating patient characteristics to outcome. The missing information made a potentially useful contribution uninterpretable. The difficulties encountered in evaluating this incomplete report typify a problem that journals increasingly will face as they deal with articles having commercial importance. Many journal editors have not yet stated a position on the practice of withholding proprietary information from articles submitted for publication. The fact that commercial interests arise in an article on health services research indicates the economic importance of this growing field. Health services research deals with effectiveness, costs, and efficiency of health care. In order to interpret observations of health outcomes, objective methods are needed to characterize the patient population involved. For example, a clinical scoring system measuring severity of illness might assist in the interpretation of differences in clinical outcomes between two health care organizations. Using clinical scoring systems, the investigator may be able to attribute differing outcomes … Address correspondence to: Robert K. Kanter, MD, Department of Pediatrics, SUNY Health Science Center, 750 East Adams St, Syracuse, NY 13210.

In 2002, the Agency for Healthcare Research and Quality (AHRQ) defined health services research as ''research [that] examines how people get access to health care, how much care costs, and what happens to patients as a result of this care. The main goals of health services research are to identify the most effective ways to organize, manage, finance, and deliver high quality care; reduce medical errors; and improve patient safety'' (http://www.academy health.org). AcademyHealth's (AH) definition is parallel but focuses more explicitly on the factors studied. Thus AH defines health services research as ''the multidisciplinary field of scientific investigation that studies how social factors, financing systems, organizational structures and processes, health technologies, and personal behaviors affect access to health care, the quality and cost of health care, and ultimately our health and well-being. Its research domains are individuals, families, organizations, institutions, communities, and populations'' (http://www.academyhealth.org). Explicit in both definitions is the notion that health services researchers should strive to identify and estimate the causal effects on outcomes of interest of alternative organizational structures, management approaches, financing systems, provider practices, and personal choices regarding lifestyle and behavior. Without a focus on causal effects, it would be impossible to identify the most effective ways to achieve the outcomes we seek through clinical, management, or policy interventions.

BackgroundGlobally, the importance of effective national health research systems has gained considerable attention. Literature indicates low research output in Africa; Africa accounts for only 2% of the world's research output and 1.3% of global publications. In Somaliland, where provision of quality healthcare services is crucial, understanding and enhancing the health research system is a critical endeavor.AimThe aim of this study is to explore the perspectives of government and non-governmental stakeholders on the health research systems in Somaliland.MethodThe study employed an exploratory qualitative study design that entailed in-depth interviews with participants. Thirty-four study participants were interviewed; they included key persons in the academic and health sector, government and international and local non-governmental organisations (NGOs) involved in health research systems. A semi structured interview guide was used to conduct the in-depth interviews with purposively selected participants. The collected data was analyzed thematically.FindingsWe found that there was no national health research center in Somaliland. The country also lacked a national health research policy. There was limited funding for research, funds were mostly from international organisations and researchers' own funds. In addition, staff working in research centers were ill equipped to conduct research and study participants highlighted the need for national health research governance.ConclusionThis study highlights the importance of health research systems in Somaliland. We recommend the establishment of a national health research institute, development of a national health research policy and priorities, allocation of sufficient and sustainable funding, capacity building of staff and strengthening of the national health research governance in health research systems.

During the excellent Conference on Health Services Research in Europe (http://www.healthservicesresearch.eu/), in the Hague, the Netherlands, in March 2010, a conversation with a compatriot followed the perennial topic ‘What is public health research?’ On this occasion there was a twist: ‘Is health services research also public health research?’ We agreed they are both parts of the same activity, and noted that more health services research is done in institutes of public health than in university medical schools. Yet then my colleague said, ‘But I would never publish in the European Journal of Public Health . It has the wrong title.’ Also last year was the first Global Symposium on Health Systems Research (http://www.hsr-symposium.org/). The meeting was held in Montreux, Switzerland [where 1400 participants also attended the 2006 European Public Health Association (EUPHA) annual conference, memorably hosted by the Swiss Society for Public Health], with multiple international sponsorship including World Health Organisation (WHO) Headquarters in Geneva and its daughter organization the Alliance for Health Policy and Systems Research. The Global symposium, also an excellent meeting, was very different from the Hague conference. Although held in Europe, its perspective was slanted away from experience in ‘high-income’ countries. It drew on earlier annual meetings of the Global Forum for Health Research, also WHO sponsored, and including two global ministerial meetings on health research in 2004 (Mexico) and 2008 (Mali). It had a very ‘official’ character, with most participants (and their ‘per diems’) being funded by international sponsors or governments, and few participants paying themselves. How can we develop health services and systems research …

Who is sensitising whom? A participatory interview guide development as an awareness tool within a health care research project

Health services research (HSR) is ‘the 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 our health and well-being’.1 HSR is ‘complementary to, and partly overlaps, with public health research, even if “health” itself is not always the topic of study or even among the set of variables taken into account’.2 A recent European Commission funded project ‘HSR Europe’ has contributed to the identification of research priorities in various targeted areas of HSR: (i) health-care systems; (ii) health-care organizations and service delivery; (iii) health technology assessment; and (iv) benchmarking and performance indicators. In addition, this project focuses on capacity building for HSR, the organization of the HSR community in Europe and the relationship between research and policy.3 The question of capacity building for HSR and the organization of the HSR community in Europe is also a topic of recurrent debate at annual meetings of the European Public Health Association (EUPHA) section HSR. As European health services researchers, we observe our American counterparts with certain envy. The American Academy of Health is a large professional society for HSR and health policy analysts, with two official journals ( Health Affairs and Health Services Research ), an Annual Research Meeting hosting 2400 attendees, and an annual National Health Policy Conference (http://www.academyhealth.org). Within a few European countries, there are professional …

Participatory approaches have gained broad interest among researchers as a vehicle for allowing participants’ experiences and voices to inform research, beyond simply being a source of data. However, participants in mentoring programs, particularly young people, often are not included in research partnerships in a meaningful way. Additionally, practitioners often struggle to translate research findings into program improvements. This paper examines the experiences of a research team collaborating with two user groups: mentoring practitioners, and youth with migrant and refugee backgrounds participating in mentoring programs. With ambitions for meaningful user involvement, our aim was to develop and test a digital intervention for supporting social capital in mentoring. The paper draws primarily upon participant observation and qualitative data from a focus group and panel discussions. While youth voices did inform and shape the research, we also experienced challenges related to youth understanding and engagement. The adult practitioners participated actively but encountered tensions due to their dual roles as co-researchers and mentoring professionals, and resource constraints. Ultimately, a close collaboration enabled the co-creation of adaptations to our research approaches, allowing meaningful participation for some of the youth, and facilitating program changes. This paper offers lessons for researchers wishing to conduct participatory research in the context of youth mentoring, as well as specific suggestions for those studying social capital. It contributes to the discussion on participatory approaches with multicultural youth, presenting critical reflections on our experiences within this mentoring context.

Interpretative Phenomenological Analysis (IPA) as a tool for participatory research within Critical Autism Studies: A systematic review