scholarly journals Creativity in Public Involvement: Promoting Meaningful Collaboration in Health Outcome Measures Research

2020 ◽  
Author(s):  
Katherine Broomfield ◽  
Claire Criag ◽  
Sarah Smith ◽  
Georgina Jones ◽  
Simon Judge ◽  
...  
Keyword(s):  
Health Outcome ◽  
Outcome Measures ◽  
Public Involvement ◽  
Development Project ◽  
Research Project ◽  
Creative Methods ◽  
Patient Reported ◽  
Communication Difficulties ◽  
Group Members ◽  
The Impact

Abstract Background: The role of public involvement (PI) in healthcare research is growing in importance and it is imperative that researchers continuously reflect on how to promote the inclusion of patients and service users in the design and delivery of research. PI offers a mechanism for end-users to be involved planning, executing, and reporting research that develops health outcome measures. Some patient groups, including people who have communication difficulties, may struggle to engage in the methods traditionally employed to promote PI engagement such as questionnaires and focus groups. Methods: This article describes a longitudinal case-study of a PI group, consisting of people who have communication difficulties, for a patient-reported outcome development project. Creative methods, informed by the participatory design principles of enacting, seeing and doing, were introduced stepwise into seven PI meetings. Data from video and visual minutes were used to evaluate the impact of the methods, following each group. Feedback, in the form of verbal and visual outputs taken directly from group meeting minutes, along with vignettes evidenced the impact of the methods on the project and group members.Results: Creative methods enabled the PI group members to meaningfully contribute in meetings, to interact dynamically and to engage with the aims and processes of the research project. Their involvement facilitated the development of accessible recruitment materials, informed data analysis and supported the dissemination of project outputs. Employing creative methods also enabled both PI group members and the academic team to reflect on their own roles within the research project and the impact that involvement in the PI group has had on their personal development and perspectives on research.Conclusion: The impact of using creative methods in PI for this PROM development project improved collaboration and understanding between PI members and the academic team. The meaningful engagement of people who have communication difficulties in PI generated a more accessible project in terms of both process and impact. Creativity has applicability beyond people whose communication is non-verbal; it should be harnessed by research teams to identify and breakdown barriers to involvement to develop outcome tools that reflect the diversity of our populations.

scholarly journals Creativity in public involvement: supporting authentic collaboration and inclusive research with seldom heard voices

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Katherine Broomfield ◽  
Claire Craig ◽  
Sarah Smith ◽  
Georgina Jones ◽  
Simon Judge ◽  
...  
Keyword(s):  
Participatory Design ◽  
Public Involvement ◽  
Patient Reported Outcome ◽  
Development Project ◽  
Research Project ◽  
Creative Methods ◽  
Patient Reported ◽  
Communication Difficulties ◽  
Group Members ◽  
The Impact

Abstract Background The role of public involvement (PI) in healthcare research is growing in importance and it is imperative that researchers continuously reflect on how to promote the inclusion of patients and service users in the design and delivery of research. PI offers a mechanism for end-users to be involved planning, executing, and reporting research. Some patient groups, including people who have communication difficulties, may struggle to engage in the methods traditionally employed to promote PI engagement such as questionnaires and focus groups. Methods This article describes a longitudinal case-study of a PI group, consisting of people who have communication difficulties, for a patient-reported outcome development project. Creative methods, informed by the participatory design principles of enacting, seeing and doing, were introduced stepwise into seven PI meetings. Data from video and visual minutes were used to evaluate the impact of the methods, following each group. Feedback, in the form of verbal and visual outputs taken directly from group meeting minutes, along with vignettes evidenced the impact of the methods on the project and group members. Results Creative methods enabled the PI group members to successfully contribute in meetings, to interact dynamically and to engage with the aims and processes of the research project. Their involvement facilitated the development of accessible recruitment materials, informed data analysis and supported the dissemination of project outputs. Employing creative methods also enabled both PI group members and the academic team to reflect on their own roles within the research project and the impact that their active involvement in the PI group has had on their personal development and perspectives on research. Conclusion The impact of using creative methods in PI for this patient-reported outcome measure (PROM) development project improved collaboration and understanding between PI members and the academic team. The authentic engagement of people who have communication difficulties in PI generated a more accessible project in terms of both process and impact. Creativity has applicability beyond people whose communication is non-verbal; it should be harnessed by research teams to identify and breakdown barriers to involvement to develop outcome tools that reflect the diversity of our populations.

scholarly journals The Impact of Patient Interactive Systems on the Management of Pain in an Inpatient Hospital Setting: A Systematic Review

2019 ◽  
Vol 10 (04) ◽  
pp. 580-596 ◽  
Author(s):  
Raniah N. Aldekhyyel ◽  
Caitlin J. Bakker ◽  
Michael B. Pitt ◽  
Genevieve B. Melton
Keyword(s):  
Pain Management ◽  
Outcome Measures ◽  
User Satisfaction ◽  
Hospital Setting ◽  
Interactive Systems ◽  
Management Systems ◽  
Interactive System ◽  
Inpatient Setting ◽  
Patient Reported ◽  
The Impact

Background While some published literature exists on the use of interactive patient care systems, the effectiveness of these systems on the management of pain is unclear. To fill this gap in knowledge, we aimed to understand the impact and outcomes of pain management patient interactive systems in an inpatient setting. Methods A systematic literature review was conducted across seven databases, and results were independently screened by two researchers. To extract relevant data, critical appraisal forms were developed and each paper was examined by two experts. Information included patient interactive system category, patient population and number of participants/samples, experiment type, and specific outcome measures. Results Out of 58 full-text articles assessed for eligibility, 18 were eligible and included in the final qualitative synthesis. Overall, there were two main types of pain management interactive systems within the inpatient setting (standalone systems and integrated platform systems). While systems were diverse especially for integrated platforms, most reported systems were entertainment distraction systems. Reports examined a variety of outcome measures, including changes in patient-reported pain levels, patient engagement, user satisfaction, changes in clinical workflow, and changes in documentation. In the 13 systems measuring pain scores, 12 demonstrated a positive impact on pain level scores. Conclusion Pain management systems appear to be effective in lowering patient level scores, but research comparing the effectiveness and efficacy of one type of interactive system versus another in the management of pain is needed. While not conclusive, pain management systems integrated with other technology platforms show potentially promising effects with improving patient communication, education, and self-reporting.

scholarly journals A systematic review of patient-reported outcome measures in paediatric otolaryngology

2017 ◽  
Vol 132 (1) ◽  
pp. 2-7 ◽  
Author(s):  
J Powell ◽  
S Powell ◽  
A Robson
Keyword(s):  
Outcome Measures ◽  
English Language ◽  
Health Assessment ◽  
Paediatric Population ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Specific Patient ◽  
Patient Reported ◽  
The Impact

AbstractBackground:Recently, there has been increased emphasis on the development and application of patient-reported outcome measures. This drive to assess the impact of illness or interventions, from the patient's perspective, has resulted in a greater number of available questionnaires. The importance of selecting an appropriate patient-reported outcome measure is specifically emphasised in the paediatric population. The literature on patient-reported outcome measures used in paediatric otolaryngology was reviewed.Methods:A comprehensive literature search was conducted using the databases Medline, Embase, Cumulative Index to Nursing and Allied Health Literature, and PsycInfo, using the terms: ‘health assessment questionnaire’, ‘structured questionnaire’, ‘questionnaire’, ‘patient reported outcome measures’, ‘PROM’, ‘quality of life’ or ‘survey’, and ‘children’ or ‘otolaryngology’. The search was limited to English-language articles published between 1996 and 2016.Results:The search yielded 656 articles, of which 63 were considered relevant. This included general paediatric patient-reported outcome measures applied to otolaryngology, and paediatric otolaryngology disease-specific patient-reported outcome measures.Conclusion:A large collection of patient-reported outcome measures are described in the paediatric otolaryngology literature. Greater standardisation of the patient-reported outcome measures used in paediatric otolaryngology would assist in pooling of data and increase the validation of tools used.

scholarly journals The impact of patient-reported outcome measures in clinical practice for pain: a systematic review

2016 ◽  
Vol 26 (2) ◽  
pp. 245-257 ◽  
Author(s):  
Michelle M. Holmes ◽  
George Lewith ◽  
David Newell ◽  
Jonathan Field ◽  
Felicity L. Bishop
Keyword(s):  
Systematic Review ◽  
Clinical Practice ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
The Impact

scholarly journals Capturing the experiences of patients with inherited optic neuropathies: a systematic review of patient-reported outcome measures (PROMs) and qualitative studies

2022 ◽  
Author(s):  
Benson S. Chen ◽  
Tomasz Galus ◽  
Stephanie Archer ◽  
Valerija Tadić ◽  
Mike Horton ◽  
...  
Keyword(s):  
Systematic Review ◽  
Health Status ◽  
Outcome Measures ◽  
Vision Loss ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Qualitative Studies ◽  
Psychometric Performance ◽  
Patient Reported ◽  
The Impact

Abstract Purpose To identify and comprehensively evaluate studies capturing the experience of individuals affected by an inherited optic neuropathy (ION), focusing on patient-reported outcome measures (PROMs) and qualitative studies where the health status and quality of life (QoL) of these individuals have been explored. Methods Systematic review of five databases using a search strategy combining four concepts: (1) ION; (2) QoL and health status; (3) PROMs; and (4) qualitative research. Studies assessing the impact of ION on any QoL domain using a PROM or qualitative methodology were included and appraised, using criteria based on the COSMIN checklist (for PROM studies) and the CASP checklist (for qualitative studies). Results Of 1326 unique articles identified, six studies were included. Five PROMs were identified: Visual Function Index (VF-14); Hospital Anxiety and Depression Scale (HADS); a novel graphical online assessment tool (NGOAT) for reporting emotional response to vision loss; a new PROM informed by the DSM-V Criteria for Major Depressive Disorder; and an interpersonal and career ‘impact rating’ PROM. The psychometric performance of included PROMs were poorly described. Qualitative studies found that vision loss resulted in psychosocial losses including loss of social and communication skills and loss of independence and freedom. Factors that modified the response to vision loss were also identified. Conclusion The current PROMs used by individuals with ION have poor content coverage, primarily measuring activity limitation and emotional well-being, and insufficient reporting of psychometric performance. There is a need to develop a PROM for individuals ION to report their experiences of living with their condition.

scholarly journals International Dermatology Outcome Measures (IDEOM): Report from the 2020 Annual Meeting

Dermatology ◽  
2021 ◽  
pp. 1-8
Author(s):  
Alison H. Kohn ◽  
Afsaneh Alavi ◽  
April W. Armstrong ◽  
Folawiyo Babalola ◽  
Amit Garg ◽  
...  
Keyword(s):  
Psoriatic Arthritis ◽  
Annual Meeting ◽  
Outcome Measures ◽  
Pyoderma Gangrenosum ◽  
Actinic Keratosis ◽  
Hidradenitis Suppurativa ◽  
Outcome Measurements ◽  
Dermatological Disease ◽  
Patient Reported ◽  
The Impact

<b><i>Background:</i></b> The International Dermatology Outcome Measures (IDEOM) initiative is a non-profit organization that aims to develop evidence-based outcome measurements to evaluate the impact of treatments for patients with dermatological disease. IDEOM includes all key stakeholders in dermatology (patient, physician, industry, insurer, and government) during the process of developing such outcome measurements. <b><i>Summary:</i></b> Here, we provide an update of IDEOM activities that were presented at the 2020 IDEOM Virtual Annual Meeting (October 23–24, 2020). During the meeting, multiple IDEOM workgroups (psoriasis, psoriatic arthritis, hidradenitis suppurativa, acne, pyoderma gangrenosum, and actinic keratosis) shared their progress to date, as well as future directions in developing and validating Patient-Reported Outcome Measures. Updates on demonstrating efficacy in clinicals trials by the US Food and Drug Administration are also summarized. <b><i>Key Messages:</i></b> In this report, we summarize the work presented by each IDEOM workgroup (psoriasis, psoriatic arthritis, hidradenitis suppurativa, acne, pyoderma gangrenosum, and actinic keratosis) at the 2020 IDEOM Virtual Annual Meeting.

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