Design and preliminary evaluation of a newly designed patient-friendly discharge letter – a randomized, controlled participant-blind trial

Smolle, Christian; Schwarz, Christine; Hoffmann, Magdalena; Kamolz, Lars‐Peter; Sendlhofer, Gerald; Brunner, Gernot

doi:10.1186/s12913-021-06468-3

Cited by 5 publications

(5 citation statements)

References 24 publications

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“…One aspect that we were perhaps made more aware of was the importance of using plain language and avoiding acronyms when working with PPI advisors. It has been advised that the use of abbreviations is kept to a minimum and an explanation given when they are first used, short sentences are used, and technical terms avoided when developing documentation for health [ 30 ]. Our recommendation is that this approach is used when working with PPI advisors too.…”

Section: Discussionmentioning

confidence: 99%

The mutual benefits of patient and public involvement in research: an example from a feasibility study (MoTaStim-Foot)

2021

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Background Patient and public involvement (PPI) in research has increased steadily over the last two decades and is now both expected and appropriately resourced by many funding bodies, including the National Institute for Health Research (NIHR). However, PPI in research occurs in many different capacities and numerous frameworks exist for reporting or appraising patient involvement activities. The aim of this article is to describe processes involving PPI contributions to an NIHR-funded mixed-methods feasibility study (MoTaStim-Foot). Details of PPI advisors’ input, from initial identification and prioritisation of research ideas, to research delivery and dissemination, are discussed. Methods Extensive PPI for MoTaStim-Foot is reported, with consideration of Research Design Service (RDS) advice for PPI for research, involving identifying and prioritising: design; grant proposal development; undertaking/managing research; analysing and interpreting; dissemination; implementation; monitoring and evaluation. Two PPI workshops were undertaken; success in meeting UK standards for public involvement was audited against specific success criteria by two researchers, with discussion and consideration regarding how well our PPI achieved inclusive opportunities, working together, support and learning, governance, communications and impact. How PPI can be improved for future trials was also considered. Although the advantages of PPI for researchers were considered, the benefits for PPI advisors were also analysed. Results UK standards for public involvement were achieved, along with seven relevant research processes suggested by the RDS. PPI advisor contributions: informed study design; contributed to successful funding; enhanced trial delivery by informing participant information sheets and daily diaries; added value through undertaking note-taker roles in focus groups and helping to analyse focus group transcripts; and assisted in dissemination. However, benefits were mutual with PPI advisors reporting feeling valued and respected, a sense of pride with renewed confidence and purpose in life. Conclusions Importance and value of PPI, to researchers and patient advisors, have been highlighted, reinforcing the benefits of working in partnership with PPI advisors. Trial registration ISRCTN 13676183; Central Portfolio Management System ID 30449. Registered 02/01/2015, https://www.isrctn.com/ISRCTN13676183.

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Section: Discussionmentioning

confidence: 99%

The mutual benefits of patient and public involvement in research: an example from a feasibility study (MoTaStim-Foot)

2021

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“…However, they were less certain about who the main receiver of the notes should be, with 76% of the authors and 66% of the staff agreeing that notes should primarily be written to be useful for healthcare professionals. This is interesting considering the increased focus on writing in a language that patients can understand, to e.g., improve their understanding of and engagement in their health and treatment (34)(35)(36).…”

Section: Discussionmentioning

confidence: 99%

Recommendations for digital sharing of notes with adolescents in mental health care: a Delphi study

Nielsen,

Steinsbekk,

Nøst

2024

Preprint

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Introduction: In many countries, healthcare professionals are legally obliged to share information from electronic health records with patients. However, concerns have been raised regarding the sharing of notes with adolescents in mental health care, and healthcare professionals have called for recommendations to guide this practice. Therefore, the aim was to reach a consensus among authors of scientific papers on recommendations for healthcare professionals’ digital sharing of notes with adolescents in mental health care. In addition, to describe whether staff at child and adolescent specialist mental healthcare clinics agreed with the recommendations. Methods: A Delphi study was conducted with authors of scientific papers to reach a consensus on recommendations. Additionally, a cross-sectional study was conducted among staff at the specialist child and adolescent mental healthcare clinics to assess whether they agreed with the recommendations that reached a consensus. Results: Twenty-seven of the 84 invited authors responded. A consensus was achieved on 17 recommendations on central areas related to the digital sharing of notes with adolescents in mental health care. The recommendations considered how to introduce digital access to notes, write notes, support healthcare professionals, and when to withhold notes. Sixty percent or more of the 41 staff members at child and adolescent specialist mental healthcare clinics agreed with the 17 recommendations. Conclusion: Seventeen recommendations for healthcare professionals’ digital sharing of notes with adolescents in mental health care were established through a Delphi study and supported by staff at child and adolescent specialist mental healthcare clinics. Healthcare professionals can use these recommendations to guide their practice of sharing notes with adolescents in mental health care.

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“…However, they were less certain about who the main receiver of the notes should be, with three-quarters of the authors and two-thirds of the staff agreeing that notes should primarily be written to be useful for health care professionals. This is interesting considering the increased focus on writing in a language that patients can understand, with the aim of, for example, improving their understanding of and engagement with their health and treatment [ 30 62 63 ]. This may indicate that we are still in the early stages of implementing this practice, and there are some challenges associated with the multiple audiences of the notes.…”

Section: Discussionmentioning

confidence: 99%

Development of Recommendations for the Digital Sharing of Notes With Adolescents in Mental Health Care: Delphi Study

Nielsen,

Steinsbekk,

Nøst

2024

JMIR Ment Health

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Background In many countries, health care professionals are legally obliged to share information from electronic health records with patients. However, concerns have been raised regarding the sharing of notes with adolescents in mental health care, and health care professionals have called for recommendations to guide this practice. Objective The aim was to reach a consensus among authors of scientific papers on recommendations for health care professionals’ digital sharing of notes with adolescents in mental health care and to investigate whether staff at child and adolescent specialist mental health care clinics agreed with the recommendations. Methods A Delphi study was conducted with authors of scientific papers to reach a consensus on recommendations. The process of making the recommendations involved three steps. First, scientific papers meeting the eligibility criteria were identified through a PubMed search where the references were screened. Second, the results from the included papers were coded and transformed into recommendations in an iterative process. Third, the authors of the included papers were asked to provide feedback and consider their agreement with each of the suggested recommendations in two rounds. After the Delphi process, a cross-sectional study was conducted among staff at specialist child and adolescent mental health care clinics to assess whether they agreed with the recommendations that reached a consensus. Results Of the 84 invited authors, 27 responded. A consensus was reached on 17 recommendations on areas related to digital sharing of notes with adolescents in mental health care. The recommendations considered how to introduce digital access to notes, write notes, and support health care professionals, and when to withhold notes. Of the 41 staff members at child and adolescent specialist mental health care clinics, 60% or more agreed with the 17 recommendations. No consensus was reached regarding the age at which adolescents should receive digital access to their notes and the timing of digitally sharing notes with parents. Conclusions A total of 17 recommendations related to key aspects of health care professionals’ digital sharing of notes with adolescents in mental health care achieved consensus. Health care professionals can use these recommendations to guide their practice of sharing notes with adolescents in mental health care. However, the effects and experiences of following these recommendations should be tested in clinical practice.

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Design and preliminary evaluation of a newly designed patient-friendly discharge letter – a randomized, controlled participant-blind trial

Cited by 5 publications

References 24 publications

The mutual benefits of patient and public involvement in research: an example from a feasibility study (MoTaStim-Foot)

The mutual benefits of patient and public involvement in research: an example from a feasibility study (MoTaStim-Foot)

Recommendations for digital sharing of notes with adolescents in mental health care: a Delphi study

Development of Recommendations for the Digital Sharing of Notes With Adolescents in Mental Health Care: Delphi Study

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