Dataset Information

Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations.

ABSTRACT:

Background

There are increasing calls for patient involvement in sharing health research results, but no evidence-based recommendations to guide such involvement. Our objectives were to: (1) conduct a systematic review of the evidence on patient involvement in results sharing, (2) propose evidence-based recommendations to help maximize benefits and minimize risks of such involvement and (3) conduct this project with patient authors.

Methods

To avoid research waste, we verified that no systematic reviews were registered or published on this topic. We co-created, with patients, a PRISMA-P-compliant protocol. We included peer-reviewed publications reporting the effects of patient involvement in preparing peer-reviewed publications or results summaries from health research studies. We searched (9/10/2017) MEDLINE, EMBASE and the Cochrane Database of Systematic Reviews, and secondary information sources (until 11/06/2018). We assessed the risk of bias in eligible publications and extracted data using standardized processes. To evaluate patient involvement in this project, we co-created a Patient Authorship Experience Tool.

Results

All nine eligible publications reported on patient involvement in preparing publications; none on preparing results summaries. Evidence quality was moderate. A qualitative synthesis of evidence indicated the benefits of patient involvement may outweigh the risks. We have proposed 21 evidence-based recommendations to help maximize the benefits and minimize the risks when involving patients as authors of peer-reviewed publications. The recommendations focus on practical actions patient and non-patient authors can take before (10 recommendations), during (7 recommendations) and after (4 recommendations) manuscript development. Using the Patient Authorship Experience Tool, both patient and non-patient authors rated their experience highly.

Conclusions

Based on a systematic review, we have proposed 21 evidence-based recommendations to help maximize the benefits and minimize the risks of involving patients as authors of peer-reviewed publications.

SUBMITTER: Arnstein L

PROVIDER: S-EPMC7313171 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations.

Arnstein Lauri L Wadsworth Anne Clare AC Yamamoto Beverley Anne BA Stephens Richard R Sehmi Kawaldip K Jones Rachel R Sargent Arabella A Gegeny Thomas T Woolley Karen L KL

Research involvement and engagement 20200624

<h4>Background</h4>There are increasing calls for patient involvement in sharing health research results, but no evidence-based recommendations to guide such involvement. Our objectives were to: (1) conduct a systematic review of the evidence on patient involvement in results sharing, (2) propose evidence-based recommendations to help maximize benefits and minimize risks of such involvement and (3) conduct this project with patient authors.<h4>Methods</h4>To avoid research waste, we verified tha ...[more]

PMID: 32587753

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Project description:BackgroundQuantitative data are lacking on published malaria research. The purpose of the study is to characterize trends in malaria-related literature from 1990 to 2009 in 11 Asian-Pacific countries that are committed to malaria elimination as a national goal.MethodsA systematic search was conducted for articles published from January 1990 to December 2009 in PubMed/MEDLINE using terms for malaria and 11 target countries (Bhutan, China, North Korea, Indonesia, Malaysia, Philippines, Solomon Islands, South Korea, Sri Lanka, Thailand and Vanuatu). The references were collated and categorized according to subject, Plasmodium species, and whether they contained original or derivative data.Results2,700 articles published between 1990 and 2009 related to malaria in the target countries. The annual output of malaria-related papers increased linearly whereas the overall biomedical output from these countries grew exponentially. The percentage of malaria-related publications was nearly 3% (111/3741) of all biomedical publications in 1992 and decreased to less than 1% (118/12171; p < 0.001) in 2009. Thailand had the highest absolute output of malaria-related papers (n = 1211), followed by China (n = 609) and Indonesia (n = 346). Solomon Islands and Vanuatu had lower absolute numbers of publications, but both countries had the highest number of publications per capita (1.3 and 2.5 papers/1,000 population). The largest percentage of papers concerned the epidemiology and control of malaria (53%) followed by studies of drugs and drug resistance (47%). There was an increase in the proportion of articles relating to epidemiology, entomology, biology, molecular biology, pathophysiology and diagnostics from the first to the second decade, whereas the percentage of papers on drugs, clinical aspects of malaria, immunology, and social sciences decreased.ConclusionsThe proportion of malaria-related publications out of the overall biomedical output from the 11 target Asian-Pacific countries is decreasing. The discovery and evaluation of new, safe and effective drugs and vaccines is paramount. In addition the elimination of malaria will require operational research to implement and scale up interventions.

Project description:BackgroundAs palliative care research continues to expand across Europe, and the world, questions exist about the nature and type of research undertaken in addition to the research priorities for the future. This systematic review, which is the first stage of a larger scale study to identify the research priorities for palliative care on the island of Ireland, examined palliative care research conducted on the island over the last decade.MethodsA comprehensive search strategy was implemented and strict eligibility criteria were applied in order to identify relevant peer-reviewed journal articles. Inclusion criteria were all of the palliative care studies undertaken on the island of Ireland and published between January 2002 and May 2012. These were assessed in relation to year, setting, sample size, research methodology, and relevant findings.Results412 publications were identified for screening and their abstracts obtained. After eliminating articles that did not meet the inclusion criteria, 151 remained for further analysis. A thematic analysis of 128 studies published between 2006 and 2012 revealed eight core themes: (1) specific groups/populations; (2) services and settings; (3) management of symptoms (physical, psychological, social); (4) bereavement; (5) communication and education; (6) death and dying; (7) spirituality; and (8) complementary and alternative medicine/intervention (CAM). There was an upward trend in the number of publications in palliative care research over the last ten years with over 72% of studies being published within the previous four years. A slightly higher number of studies were quantitative in nature (surveys, questionnaires, standardised assessments) followed by qualitative (individual and focus group interviews, case studies, documentary analysis and retrospective case note reviews), mixed methods, and systematic reviews.ConclusionsWhilst there has been a welcome growth in palliative care research across Ireland, this has largely been needs-based and small scale studies. In contrast, international researchers and decision makers recommend the need for more outcomes focused multidisciplinary research. An examination of palliative care research is an essential first step in seeking to develop future priority areas for further research, highlighting opportunities for future collaboration both nationally and internationally.

Project description:Study Design: Scoping review Objective: To study the design, clinical setting and outcome measures used in spinal cord injury rehabilitation publications. Methods: A literature search on PubMed and Medline was conducted focusing on articles published between 1990-2016 and using "traumatic SCI", "functional outcomes", "rehabilitation", "work" and "return to work" as outcomes. Studies were categorized based on design (intervention, including RCTs vs. non-intervention studies), settings (inpatient vs. outpatient vs. transition), and outcome measures used (impairment vs. function vs. participation/integration vs. quality of life vs. symptoms). Work-related studies were categorized independently. Results: Five hundred forty-four articles met the inclusion criteria. Of these, 234 were interventional studies, including 23 RCTs. Studies were evenly divided among inpatient, outpatient and transition settings. Of the 234 interventional studies, 143 used functional evaluations. Sixty-one different functional instruments were used, with a predominant use of the Functional Independence Measure (61 times) and an additional use of SCI-specific measures, i.e. Spinal Cord Independence Measure and Craig Handicap Assessment and Reporting Technique (13 times each). Fifty-one studies measured mobility, while only three measured hand functions. The work-related sub-analysis revealed 32 intervention studies (no RCTs), of which 15 used functional evaluations and only three focused on tetraplegia. Conclusion: Our study revealed a paucity of intervention trials and RCTs, indicating a dearth of knowledge that would be needed to establish evidence-based practice guidelines. This is particularly true for tetraplegia. While standard measures of function were frequently used, providing valuable data, there is no consensus about what exact outcome measure to use. Using newer measurement techniques, for instance based on the application of item response theory, should be considered to enhance uniformity.

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Dataset Information

Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations.

Background

Methods

Results

Conclusions

Publications

Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations.

Similar Datasets

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