Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research

This article focuses on a particular aspect of research and design processes in community-based projects: the transition from exploratory stages, concerned with knowledge production, to design stages, in which goals for action-taking are formulated and desired directions for change are envisioned. This paper offers a reflection about the methodological processes that underpin this transition, in response to the questions: How are design goals formulated in community informatics interventions that rely on data-intensive exploratory methodologies, and what factors and dynamics shape them? Guided by these questions, we shed light on various issues related to this transition by recounting and analysing cases taken from field experiences within three different community projects in Syria, Brazil and Mozambique. The article proposes that the transition is associated with shifts in intentionality, which are elusive and hard to grasp, particularly in participatory approaches. Three analytical categories are put forward to illuminate the dynamics of intentionality shifts along the continuum of transitioning from exploration to design. Reflections based on the empirical cases are contributed.

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The practice of active patient involvement in rare disease research using ICT: experiences and lessons from the RUDY JAPAN project

Research Involvement and Engagement ◽

10.1186/s40900-021-00253-6 ◽

2021 ◽

Vol 7 (1) ◽

Author(s):

Nao Hamakawa ◽

Atsushi Kogetsu ◽

Moeko Isono ◽

Chisato Yamasaki ◽

Shirou Manabe ◽

...

Keyword(s):

Decision Making ◽

Medical Research ◽

Rare Disease ◽

Patient Involvement ◽

Questionnaire Development ◽

Steering Committee ◽

Research Project ◽

Dynamic Consent ◽

Patient Reported ◽

Active Patient

Abstract Background The role of patients in medical research is changing, as more emphasis is being placed on patient involvement, and patient reported outcomes are increasingly contributing to clinical decision-making. Information and communication technology provides new opportunities for patients to actively become involved in research. These trends are particularly noticeable in Europe and the US, but less obvious in Japan. The aim of this study was to investigate the practice of active involvement of patients in medical research in Japan by utilizing a digital platform, and to analyze the outcomes to clarify what specific approaches could be put into practice. Methods We developed the RUDY JAPAN system, an ongoing rare disease medical research platform, in collaboration with the Rare and Undiagnosed Diseases Study (RUDY) project in the UK. After 2 years of preparation, RUDY JAPAN was launched in December 2017. Skeletal muscle channelopathies were initially selected as target diseases, and hereditary angioedema was subsequently added. Several approaches for active patient involvement were designed through patient-researcher collaboration, namely the Steering Committee, questionnaire development, dynamic consent, and other communication strategies. We analyzed our practices and experiences focusing on how each approach affected and contributed to the research project. Results RUDY JAPAN has successfully involved patients in this research project in various ways. While not a part of the initial decision-making phase to launch the project, patients have increasingly been involved since then. A high level of patient involvement was achieved through the Steering Committee, a governance body that has made a major contribution to RUDY JAPAN, and the process of the questionnaire development. The creation of the Patient Network Forum, website and newsletter cultivated dialogue between patients and researchers. The registry itself allowed patient participation through data input and control of data usage through dynamic consent. Conclusions We believe the initial outcomes demonstrate the feasibility and utility of active patient involvement in Japan. The collaboration realized through RUDY JAPAN was enabled by digital technologies. It allowed busy patients and researchers to find the space to meet and work together for the Steering Committee, questionnaire development and various communication activities. While the practice of active patient involvement in Japan is still in its early stages, this research confirms its viability if the right conditions are in place. (331 words).

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Patient involvement in medical research: what patients and physicians learn from each other

Orphanet Journal of Rare Diseases ◽

10.1186/s13023-018-0969-1 ◽

2019 ◽

Vol 14 (1) ◽

Cited By ~ 8

Author(s):

Kalen Young ◽

◽

Dana Kaminstein ◽

Ana Olivos ◽

Cristina Burroughs ◽

...

Keyword(s):

Medical Research ◽

Patient Involvement

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A semantic cloud infrastructure for data-intensive medical research

International Journal of Big Data Intelligence ◽

10.1504/ijbdi.2015.069091 ◽

2015 ◽

Vol 2 (2) ◽

pp. 91 ◽

Cited By ~ 1

Author(s):

Yuriy Kaniovskyi ◽

Siegfried Benkner ◽

Chris Borckholder ◽

Steven Wood ◽

Piotr Nowakowski ◽

...

Keyword(s):

Medical Research ◽

Cloud Infrastructure ◽

Data Intensive

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The participatory turn in health and medicine: The rise of the civic and the need to ‘give back’ in data-intensive medical research

Humanities and Social Sciences Communications ◽

10.1057/s41599-021-00979-4 ◽

2021 ◽

Vol 8 (1) ◽

Author(s):

Lotje E. Siffels ◽

Tamar Sharon ◽

Andrew S. Hoffman

Keyword(s):

Medical Research ◽

Individual Responsibility ◽

Research Participants ◽

Data Intensive ◽

Critical Scholarship ◽

Study Staff ◽

Medical Researchers ◽

Orders Of Worth ◽

Study Participants ◽

Critical Literature

AbstractWhat has been called the “participatory turn” in health and medicine refers to a general shift from paternalistic and hierarchical, to more collaborative and egalitarian relationships between medical experts and patients/research participants; a shift from what the pragmatic sociologists Boltanski and Thévenot (2006) call a “domestic” to a “civic” order of worth. Critical scholarship on the participatory turn tends to emphasize discrepancies between ideals of equality and empowerment, and practices of increased individual responsibility and disempowerment. In this paper, we depart from this critical literature by suspending evaluation about authentic and inauthentic ideals and practices. Instead, we explore the issues and challenges that arise in the process of ensuring that ideal and practice align in what we call a civic-participatory style of doing medical research. Drawing on interviews and observations carried out with medical researchers, coordinators and assessors in a longitudinal cohort study called the Personalized Parkinson’s Project (PPP), we show that for study staff it is often unclear how they can meet the demands of reciprocity towards research participants that are presupposed by civic-participatory ideals. In particular, in the context of a study whose aim is the creation of a comprehensive dataset comprised of clinical, environmental and lifestyle data that study participants generously “give” over a period of 2 years, we observed a persistent concern on the part of study staff regarding what and how to “give back”. As we show, study staff negotiate and resolve this tension through recourse to creative workarounds and innovative ways of giving back, including frequent project and scientific updates, newsletters, the designation of personal assessors and pampering Event Days. The paper makes a contribution to the critical literature on the participatory turn by showing the utility of the orders of worth framework in probing the challenges and workarounds that emerge in settings where an incumbent style of organizing medical research (here, the 'civic') comes to challenge practices hitherto organized according to a wholly different logic (in this case, the 'domestic')—without making assumptions about the (in)authenticity of such ideals and practices. Moreover, we contend that this framework offers new tools for evaluating participatory research projects in the form of “good” or “successful” civic–domestic compromises.

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The social licence for data-intensive health research: towards co-creation, public value and trust

BMC Medical Ethics ◽

10.1186/s12910-021-00677-5 ◽

2021 ◽

Vol 22 (1) ◽

Author(s):

Sam H. A. Muller ◽

Shona Kalkman ◽

Ghislaine J. M. W. van Thiel ◽

Menno Mostert ◽

Johannes J. M. van Delden

Keyword(s):

Medical Research ◽

Health Research ◽

Common Good ◽

Conceptual Analysis ◽

Biomedical Literature ◽

Systematic Search ◽

The Public ◽

Data Intensive ◽

The Social ◽

Ethical Governance

Abstract Background The rise of Big Data-driven health research challenges the assumed contribution of medical research to the public good, raising questions about whether the status of such research as a common good should be taken for granted, and how public trust can be preserved. Scandals arising out of sharing data during medical research have pointed out that going beyond the requirements of law may be necessary for sustaining trust in data-intensive health research. We propose building upon the use of a social licence for achieving such ethical governance. Main text We performed a narrative review of the social licence as presented in the biomedical literature. We used a systematic search and selection process, followed by a critical conceptual analysis. The systematic search resulted in nine publications. Our conceptual analysis aims to clarify how societal permission can be granted to health research projects which rely upon the reuse and/or linkage of health data. These activities may be morally demanding. For these types of activities, a moral legitimation, beyond the limits of law, may need to be sought in order to preserve trust. Our analysis indicates that a social licence encourages us to recognise a broad range of stakeholder interests and perspectives in data-intensive health research. This is especially true for patients contributing data. Incorporating such a practice paves the way towards an ethical governance, based upon trust. Public engagement that involves patients from the start is called for to strengthen this social licence. Conclusions There are several merits to using the concept of social licence as a guideline for ethical governance. Firstly, it fits the novel scale of data-related risks; secondly, it focuses attention on trustworthiness; and finally, it offers co-creation as a way forward. Greater trust can be achieved in the governance of data-intensive health research by highlighting strategic dialogue with both patients contributing the data, and the public in general. This should ultimately contribute to a more ethical practice of governance.

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Older Adults as Co-Creators in the Research Process: An Overview of Concepts, Methods, and Approaches

Innovation in Aging ◽

10.1093/geroni/igab046.1504 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 388-388

Author(s):

Anna Wanka

Keyword(s):

Social Sciences ◽

Older Adults ◽

Patient Involvement ◽

Research Process ◽

Review Of The Literature ◽

Participatory Approaches ◽

The Social ◽

Study Results ◽

Research Questions ◽

Research Domains

Abstract Participatory approaches have a long-standing tradition in the social sciences and approaches have diversified across multiple research domains. Also in ageing, there is a growing interest in involving older adults, particularly in fields like gerontechnology development, environmental gerontology or patient involvement. In this contribution, ask what participatory approaches and co-creation means in the context of ageing research. What are the benefits and challenges of involving older adults in different research domains, stages of the research process and deploying various participatory methods and approaches? To approach this question, we present preliminary results of a comprehensive scoping review of the literature and provide examples of how older adults can be involved in developing research questions together with researchers, collecting and analysing the data, as well as validating and disseminating study results.

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Application of Scanning Electron Microscopy to Medical Research

Proceedings, annual meeting, Electron Microscopy Society of America ◽

10.1017/s0424820100061963 ◽

1969 ◽

Vol 27 ◽

pp. 12-13

Author(s):

J. D. Hutchison

Keyword(s):

Electron Microscopy ◽

Electron Microscope ◽

Medical Research ◽

Prosthetic Heart Valve ◽

School Of Medicine ◽

Transmission Electron ◽

Definition Of ◽

Mechanism Of Failure ◽

The Brain ◽

Scanning Electron

When the transmission electron microscope was commercially introduced a few years ago, it was heralded as one of the most significant aids to medical research of the century. It continues to occupy that niche; however, the scanning electron microscope is gaining rapidly in relative importance as it fills the gap between conventional optical microscopy and transmission electron microscopy.IBM Boulder is conducting three major programs in cooperation with the Colorado School of Medicine. These are the study of the mechanism of failure of the prosthetic heart valve, the study of the ultrastructure of lung tissue, and the definition of the function of the cilia of the ventricular ependyma of the brain.

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Clinical Science in the 1990s

Clinical Science ◽

10.1042/cs0780001 ◽

1990 ◽

Vol 78 (1) ◽

pp. 1-1

Author(s):

M. J. Brown

Keyword(s):

Medical Research ◽

Review Process ◽

Molecular Level ◽

Short Interval ◽

Clinical Science ◽

Molecular Medicine ◽

Mutual Benefit ◽

Real Progress ◽

General Journal

From this issue, Clinical Science will increase its page numbers from an average of 112 to 128 per monthly issue. This welcome change — equivalent to at least two manuscripts — has been ‘forced’ on us by the increasing pressure on space; this has led to an undesirable increase in the delay between acceptance and publication, and to a fall in the proportion of submitted manuscripts we have been able to accept. The change in page numbers will instead permit us now to return to our exceptionally short interval between acceptance and publication of 3–4 months; and at the same time we shall be able not only to accept (as now) those papers requiring little or no revision, but also to offer hope to some of those papers which have raised our interest but come to grief in review because of a major but remediable problem. Our view, doubtless unoriginal, has been that the review process, which is unusually thorough for Clinical Science, involving a specialist editor and two external referees, is most constructive when it helps the evolution of a good paper from an interesting piece of research. Traditionally, the papers in Clinical Science have represented some areas of research more than others. However, this has reflected entirely the pattern of papers submitted to us, rather than any selective interest of the Editorial Board, which numbers up to 35 scientists covering most areas of medical research. Arguably, after the explosion during the last decade of specialist journals, the general journal can look forward to a renaissance in the 1990s, as scientists in apparently different specialities discover that they are interested in the same substances, asking similar questions and developing techniques of mutual benefit to answer these questions. This situation arises from the trend, even among clinical scientists, to recognize the power of research based at the cellular and molecular level to achieve real progress, and at this level the concept of organ-based specialism breaks down. It is perhaps ironic that this journal, for a short while at the end of the 1970s, adopted — and then discarded — the name of Clinical Science and Molecular Medicine, since this title perfectly represents the direction in which clinical science, and therefore Clinical Science, is now progressing.

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