A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients’ concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement? We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach. We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement. Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.

/pdf/patient-engagement-in-research-a-systematic-review-iwdizvcicm.pdf

Patient engagement in research: a systematic review

Background
This study aims to review the literature regarding the barriers to sampling, recruitment, participation, and retention of members of socioeconomically disadvantaged groups in health research and strategies for increasing the amount of health research conducted with socially disadvantaged groups.

/pdf/reaching-the-hard-to-reach-a-systematic-review-of-strategies-3ure630gx0.pdf

Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups

Background
There is growing attention towards increasing patient and service user engagement (PSUE) in biomedical and health services research. Existing variations in language and design inhibit reporting and indexing, which are crucial to comparative effectiveness in determining best practices.

Objective
This paper utilizes a systematic review and environmental scan to derive an evidence-based framework for PSUE.

Design
A metanarrative systematic review and environmental scan/manual search using scientific databases and other search engines, along with feedback from a patient advisory group (PAG).

Eligible sources
English-language studies, commentaries, grey literature and other sources (including systematic and non-systematic reviews) pertaining to patient and public involvement in biomedical and health services research.

Data extracted
Study description (e.g. participant demographics, research setting) and design, if applicable; frameworks, conceptualizations or planning schemes for PSUE-related endeavours; and methods for PSUE initiation and gathering patients'/service users' input or contributions.

Results
Overall, 202 sources were included and met eligibility criteria; 41 of these presented some framework or conceptualization of PSUE. Sources were synthesized into a two-part framework for PSUE: (i) integral PSUE components include patient and service user initiation, reciprocal relationships, colearning and re-assessment and feedback, (ii) sources describe PSUE at several research stages, within three larger phases: preparatory, execution and translational.

Discussion and Conclusions
Efforts at developing a solid evidence base on PSUE are limited by the non-standard and non-empirical nature of much of the literature. Our proposed two-part framework provides a standard structure and language for reporting and indexing to support comparative effectiveness and optimize PSUE.

https://onlinelibrary.wiley.com/doi/pdf/10.1111/hex.12090

Patient and service user engagement in research: a systematic review and synthesized framework

In 2009, President Obama signed an Executive Order calling for strategies to improve the health of Asian Americans and to seek data on the health disparities in Asian American subgroups.1 Data on Asian American subgroups are scarce and many health disparities remain unknown. The purpose of this Advisory is to highlight the gaps in existing research on cardiovascular disease (CVD) among Asian Americans, and to serve as a call to action on behalf of the American Heart Association to address these areas of need.

Asian Americans are the fastest growing racial/ethnic group in the United States, representing 25% of all foreign-born people in the United States.2 They are projected to reach nearly 34 million by 2050.3 Several major Federal surveys (eg, the American Community Survey, the National Health Interview Survey, and the Behavioral Risk Factor Surveillance Survey) only recently started to classify Asian Americans into 7 subgroups: Asian Indian, Chinese, Filipino, Korean, Japanese, Vietnamese, and Other Asian. The first six of these subgroups together constitute >90% of Asian Americans in the United States.4 Although some data are available on Asian subgroups from these major federal surveys, in general, these data are not available for public use because of the privacy concerns resulting from the small sample sizes within subgroups. This situation limits their utility for health-related research.

Because health surveys and questionnaires almost universally combine persons of Asian ancestry into a single group, the heterogeneity within this classification is masked. Socioeconomic and cultural factors have been found to be associated with CVD and its risk factors, which is why it is important to understand these differences among Asian subgroups. The Table shows the number of persons in each group based on the most recent US Census data available (American Community Survey, 2008), with the recognition that …

Call to action: cardiovascular disease in Asian Americans: a science advisory from the American Heart Association.

A systematic review of tools used to assess the quality of observational studies that examine incidence or prevalence and risk factors for diseases

Objectives To investigate how South Asian patients conceptualise the notion of clinical trials and to identify key processes that impact on trial participation and the extent to which communication difficulties, perceptions of risk and attitudes to authority influence these decisions. Also to identify whether 'South Asian' patients are homogeneous in these issues, and which factors differ between different South Asian subgroups and finally how professionals regard the involvement of South Asian patients and their views on strategies to increase participation. Data sources A review of the literature on minority ethnic participation in clinical trials was followed by three qualitative interview studies. Interviews were taped and transcribed (and translated if required) and subjected to framework analysis. Face-to-face interviews were conducted with 25 health professionals; 60 South Asian lay people who had not taken part in a trial and 15 South Asian trial participants. Results Motivations for trial participation were identified as follows: to help society, to improve own health or that of family and friends, out of obligation to the doctor and to increase scientific knowledge. Deterrents were concerns about drug side-effects, busy lifestyles, language, previous bad experiences, mistrust and feelings of not belonging to British society. There was no evidence of antipathy amongst South Asians to the concept of clinical trials and, overall, the younger respondents were more knowledgeable than the older ones. Problems are more likely to be associated with service delivery. Lack of being approached was a common response. Lay-reported factors that might affect South Asian participation in clinical trials include age, language, social class, feeling of not belonging/mistrust, culture and religion. Awareness of clinical trials varied between each group. There are more similarities than differences in attitudes towards clinical trial participation between the South Asian and the general population. Important decisions, such as participation in clinical trials, are likely to be made by those family members who are fluent in English and younger. Social class appears to be more important than ethnicity, and older South Asian people and those from working class backgrounds appear to be more mistrustful. Approachable patients (of the same gender, social class and fluent in English) tend to be 'cherry picked' to clinical trials. This practice was justified because of a lack of time and resources and inadequate support. South Asian patients might be systematically excluded from trials owing to the increased cost and time associated with their inclusion, particularly in relation to the language barrier. Under-representation might also be due to passive exclusion associated with cultural stereotypes. Other characteristics such as gender, age, educational level and social class can also affect trial inclusion. Conclusions Effective strategies for South Asian recruitment to clinical trials include: using multi-recruitment strategies; defining the demographic and social profiles of the population to be included; using focus groups to identify any potential barriers; consulting representative community members to provide assistance in the study; ensuring eligibility criteria are set as wide as possible; developing educational and recruitment approaches to attract ethnic minority health professionals; ensuring health professionals are adequately trained in culturally and ethnically orientated service provision; determining the most effective mass media to use in study promotion and recruitment; and targeting inner-city, single-handed practices likely to have high ethnic minority populations. Future research should consider: responses when invited to participate; the role of methodological and organisational barriers to recruitment; the complexities of recruitment from a health professional perspective; developing culturally sensitive research methods; the magnitude of the problem of under-recruitment; strategies to encourage inner-city, single-handed GP participation; and other factors affecting trial inclusion, such as age, gender, educational level and socio-cultural background.

P Tovey

Papers

Involving South Asian patients in clinical trials.