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Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice.

ABSTRACT: BACKGROUND:Partnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim is to help researchers, patients, research institutions and research ethics boards reflecting on and dealing with these issues. METHODS:We conducted a scoping review of the ethical issues and recommendations associated with partnering with patients in healthcare research. After our search strategy, 31 peer reviewed articles published between 2007 and 2017 remained and were analyzed. RESULTS:We have identified 58 first-order ethical issues and challenges associated with patient partnership in research, regrouped in 18?second-order ethical themes. Most of the issues are transversal to all phases and stages of the research process and a lot of them could also apply to patient-partnership in other spheres of health, such as governance, quality improvement, and education. We suggested that ethical issues and challenges of partnered research can be related to four ethical frameworks: 1) Research ethics; 2) Research integrity; 3) Organizational ethics, and 4) Relational ethics. CONCLUSIONS:We have identified numerous ethical issues associated with the recent approach of patient-partnership in research. These issues are more diverse than the issues associated with a more traditional research approach. Indeed, the current discussion on how we address ethical issues in research is anchored in the assumption that patients, as research participants, must be protected from risk. However, doing research with, and not on, the patient involves changes in the way we reflect on the ethical issues associated with this approach to research. We propose to broaden the ethical discussion on partnered research to not only rely on a research ethics framework, but to also frame it within the areas of research integrity, organizational ethics and relational ethics.

SUBMITTER: Martineau JT

PROVIDER: S-EPMC7216517 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

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Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice.

Martineau Joé T JT Minyaoui Asma A Boivin Antoine A

BMC medical ethics 20200511 1

<h4>Background</h4>Partnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim ...[more]

PMID: 32393230

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Project description:BackgroundIn recent years, innovations in artificial intelligence (AI) have led to the development of new healthcare AI (HCAI) technologies. Whilst some of these technologies show promise for improving the patient experience, ethicists have warned that AI can introduce and exacerbate harms and wrongs in healthcare. It is important that HCAI reflects the values that are important to people. However, involving patients and publics in research about AI ethics remains challenging due to relatively limited awareness of HCAI technologies. This scoping review aims to map how the existing literature on publics' views on HCAI addresses key issues in AI ethics and governance.MethodsWe developed a search query to conduct a comprehensive search of PubMed, Scopus, Web of Science, CINAHL, and Academic Search Complete from January 2010 onwards. We will include primary research studies which document publics' or patients' views on machine learning HCAI technologies. A coding framework has been designed and will be used capture qualitative and quantitative data from the articles. Two reviewers will code a proportion of the included articles and any discrepancies will be discussed amongst the team, with changes made to the coding framework accordingly. Final results will be reported quantitatively and qualitatively, examining how each AI ethics issue has been addressed by the included studies.DiscussionConsulting publics and patients about the ethics of HCAI technologies and innovations can offer important insights to those seeking to implement HCAI ethically and legitimately. This review will explore how ethical issues are addressed in literature examining publics' and patients' views on HCAI, with the aim of determining the extent to which publics' views on HCAI ethics have been addressed in existing research. This has the potential to support the development of implementation processes and regulation for HCAI that incorporates publics' values and perspectives.

Project description:BackgroundBiobanks are highly organized infrastructures that allow the storage of human biological specimens associated with donors' personal and clinical data. These infrastructures play a key role in the development of translational medical research. In this context, we launched, in November 2015, the first biobank in Morocco (BRO Biobank) in order to promote biomedical research and provide opportunities to include Moroccan and North African ethnic groups in international biomedical studies. Here, we present the setup and the sample characteristics of BRO Biobank.MethodsPatients were recruited at several departments of two major health-care centers in the city of Oujda. Healthy donors were enrolled during blood donation campaigns all over Eastern Morocco. From each participant, personal, clinical, and biomedical data were collected, and several biospecimens were stored. Standard operating procedures have been established in accordance with international guidelines on human biobanks.ResultsBetween November 2015 and July 2020, 2446 participants were recruited into the BRO Biobank, of whom 2013 were healthy donors, and 433 were patients. For healthy donors, the median age was 35 years with a range between 18 and 65 years and the consanguinity rate was 28.96%. For patients, the median age was 11 years with a range between 1 day and 83 years. Among these patients, 55% had rare diseases (hemoglobinopathies, intellectual disabilities, disorders of sex differentiation, myopathies, etc.), 13% had lung cancer, 4% suffered from hematological neoplasms, 3% were from the kidney transplantation project, and 25% had unknown diagnoses. The BRO Biobank has collected 5092 biospecimens, including blood, white blood cells, plasma, serum, urine, frozen tissue, FFPE tissue, and nucleic acids. A sample quality control has been implemented and suggested that samples of the BRO Biobank are of high quality and therefore suitable for high-throughput nucleic acid analysis.ConclusionsThe BRO Biobank is the largest sample collection in Morocco, and it is ready to provide samples to national and international research projects. Therefore, the BRO Biobank is a valuable resource for advancing translational medical research.

Project description:BackgroundThe internet is an increasingly popular tool in family and child research that is argued to pose new ethical challenges, yet few studies have systematically assessed the ethical issues of engaging parents and children in research online. This scoping review aims to identify and integrate evidence on the ethical issues reported when recruiting, retaining and tracing families and children in research online, and to identify ethical guidelines for internet research.MethodsAcademic literature was searched using electronic academic databases (Scopus, PsycINFO, Embase, ERIC, CINAHL and Informit) and handsearching reference lists for articles published in English between January 2006 and February 2016. Grey literature was searched using Google to identify relevant ethical guidelines.ResultsSixty-five academic articles were included after screening 3,537 titles and abstracts and 205 full-text articles. Most articles reported using the internet to recruit participants (88%) with few reporting online retention (12%) or tracing (10%). Forty percent commented on ethical issues; the majority did not discuss ethics beyond general consent or approval procedures. Some ethical concerns were specific to engaging minors online, including parental consent, age verification and children's vulnerability. Other concerns applied when engaging any research participant online, including privacy and confidentiality, informed consent and disparities in internet access. Five professional guidelines and 10 university guidelines on internet research ethics were identified. Few academic articles (5%) reported using these guidelines.ConclusionsEngaging families and children in research online introduces unique challenges requiring careful consideration. While researchers regarded themselves as responsible for ensuring research is conducted ethically, lack of use of available guidelines and limited academic literature suggests internet research is occurring without suitable guidance. We recommend broad dissemination of ethical guidelines and encourage researchers to report the methodological and ethical issues of using the internet to engage families and children in research.

Project description:BackgroundMentoring provides mentees and mentors with holistic support and research opportunities. Yet, the quality of this support has been called into question amidst suggestions that mentoring is prone to bullying and professional lapses. These concerns jeopardise mentoring's role in medical schools and demand closer scrutiny.MethodsTo better understand prevailing concerns, a novel approach to systematic scoping reviews (SSR) s is proposed to map prevailing ethical issues in mentoring in an accountable and reproducible manner. Ten members of the research team carried out systematic and independent searches of PubMed, Embase, ERIC, ScienceDirect, Scopus, OpenGrey and Mednar databases. The individual researchers employed 'negotiated consensual validation' to determine the final list of articles to be analysed. The reviewers worked in three independent teams. One team summarised the included articles. The other teams employed independent thematic and content analysis respectively. The findings of the three approaches were compared. The themes from non-evidence based and grey literature were also compared with themes from research driven data.ResultsFour thousand six titles were reviewed and 51 full text articles were included. Findings from thematic and content analyses were similar and reflected the tabulated summaries. The themes/categories identified were ethical concerns, predisposing factors and possible solutions at the mentor and mentee, mentoring relationship and/or host organisation level. Ethical concerns were found to stem from issues such as power differentials and lack of motivation whilst predisposing factors comprised of the mentor's lack of experience and personality conflicts. Possible solutions include better program oversight and the fostering of an effective mentoring environment.ConclusionsThis structured SSR found that ethical issues in mentoring occur as a result of inconducive mentoring environments. As such, further studies and systematic reviews of mentoring structures, cultures and remediation must follow so as to guide host organisations in their endeavour to improve mentoring in medical schools.

Project description:Background: Delivering person-centered care is one of the core values in general practice. Due to the complexity and multifaceted character of person-centered care, the effects of person-centered care cannot be easily underpinned with robust scientific evidence. In this scoping review we provide an overview of research on effects of person-centered care, exploring the concepts and definitions used, the type of interventions studied, the selected outcome measures, and its strengths and limitations. Methods: Systematic reviews on person-centered care compared to usual care were included from Pubmed, Embase, and PsycINFO. The search was conducted in February 2021. Data selection and charting was done by two reviewers. Results: The literature search yielded 481 articles. A total of 21 full-text articles were assessed for eligibility for inclusion. Four systematic reviews, published between 2012 and 2018, were finally included in this review. All reviews used different definitions and models and classified the interventions differently. The explicit distinction between interventions for providers and patients was made in two systematic reviews. The classification of outcomes also showed large differences, except patient satisfaction that was shared. All reviews described the results narratively. One review also pooled the results on some outcome measures. Most studies included in the reviews showed positive effects, in particular on process outcomes. Mixed results were found on patient satisfaction and clinical or health outcomes. All review authors acknowledged limitations due to lack of uniform definitions, and heterogeneity of interventions and outcomes measures. Discussion: Person-centered care is a concept that seems obvious and understandable in real life but is complex to operationalize in research. This scoping review reinforces the need to use mixed qualitative and quantitative methods in general practice research. For spreading and scaling up person-centered care, an implementation or complexity science approach could be used. Research could be personalized by defining therapeutic goals, interventions, and outcome variables based on individual preferences, goals, and values and not only on clinical and biological characteristics. Observational data and patient satisfaction surveys could be used to support quality improvement. Integrating research, education, and practice could strengthen the profession, building on the fundament of shared core values.

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Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice.

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Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice.

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