Developing a handheld record for patients with cystic fibrosis

Narayan, Omendra; Davies, Siobhan; Tibbins, Carly; Rees, JH Martyn; Lenney, Warren; Gilchrist, Francis J

doi:10.2147/prom.s86298

Cited by 3 publications

(2 citation statements)

References 10 publications

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“…This is in line with previous research that found My Medication Passport users wanted more space to add information that was relevant to them, for example, to record side effects. 18 In agreement with Narayan et al , 21 we found paper solutions to be more popular than digital, although some did prefer digital. Our finding that smartphone ownership can be a barrier is supported by Santo et al , 34 who found that 39% of 556 potential participants could not take part in a study of a medication reminder app, as they did not own a suitable smartphone.…”

Section: Discussionsupporting

confidence: 90%

How can patient-held lists of medication enhance patient safety? A mixed-methods study with a focus on user experience

Garfield

Furniss²,

Husson

et al. 2020

BMJ Qual Saf

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BackgroundPatients often carry medication lists to mitigate information loss across healthcare settings. We aimed to identify mechanisms by which these lists could be used to support safety, key supporting features, and barriers and facilitators to their use.MethodsWe used a mixed-methods design comprising two focus groups with patients and carers, 16 semistructured interviews with healthcare professionals, 60 semistructured interviews with people carrying medication lists, a quantitative features analysis of tools available for patients to record their medicines and usability testing of four tools. Findings were triangulated using thematic analysis. Distributed cognition for teamwork models were used as sensitising concepts.ResultsWe identified a wide range of mechanisms through which carrying medication lists can improve medication safety. These included improving the accuracy of medicines reconciliation, allowing identification of potential drug interactions, facilitating communication about medicines, acting as an aide-mémoire to patients during appointments, allowing patients to check their medicines for errors and reminding patients to take and reorder their medicines. Different tools for recording medicines met different needs. Of 103 tools examined, none met the core needs of all users. A key barrier to use was lack of awareness by patients and carers that healthcare information systems can be fragmented, a key facilitator was encouragement from healthcare professionals.ConclusionOur findings suggest that patients and healthcare professionals perceive patient-held medication lists to have a wide variety of benefits. Interventions are needed to raise awareness of the potential role of these lists in enhancing patient safety. Such interventions should empower patients and carers to identify a method that suits them best from a range of options and avoid a ‘one size fits all’ approach.

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Section: Discussionsupporting

confidence: 90%

How can patient-held lists of medication enhance patient safety? A mixed-methods study with a focus on user experience

Garfield

Furniss²,

Husson

et al. 2020

BMJ Qual Saf

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“…in the context of CF 11,[31][32][33][34][35][36][37][38][39][40] (3rd session). Then the psychologist specialized in medication adherence (AD) presented a methodology for structuring the process of identifying solutions to the problems identified during the two focus group sessions (4th session).…”

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confidence: 99%

A Participatory Approach Involving Patients with Cystic Fibrosis and Healthcare Professionals for the Co-Design of an Adherence-Enhancing Intervention Toolkit

Viprey¹,

Mougeot²,

Dima³

et al. 2023

PPA

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Cystic fibrosis (CF) is an inherited life-shortening disease involving a significant treatment burden. Few interventions have been proven effective in improving adherence, and of these fewer have been adopted for implementation. Patient participation in research is increasingly desired in developing relevant health care services. A participatory approach was implemented in an adult CF center to co-design an adherence-enhancing intervention toolkit. We aimed to report on the participatory process and the results regarding the co-designed intervention. Patients and Methods: Two focus group sessions and four working sessions were conducted at 4-week intervals with three healthcare professionals (HCP; physician, nurse, physiotherapist), eight patients, and two researchers (sociologist, public health pharmacist). The two initial focus group sessions were dedicated to the collection of narratives about CF treatment experiences to identify drivers of adherence. The next four working sessions were dedicated to the reflection on solutions that could alleviate the difficulties identified and be used in current clinical practice. The researchers observed during all sessions the interactions between participants, group dynamics, and process of implementation of the collective reflection. Results: The process facilitated an active participation of patients and HCP, who contributed equally to the intervention development. The co-design adherence-enhancing intervention toolkit consisted in a self-questionnaire to be completed by patients before the medical consultation and used as a communication support during the consultation, plus a toolkit of solutions to be proposed by the HCP for each barrier identified by patients, and to be followed up during the next consultation. Conclusion:This study demonstrated that a participatory approach involving CF patients and HCP lead to the development of an adherence-enhancing intervention toolkit, using a 6-session format; the benefits of the co-designed intervention on the medication adherence have yet to be tested in a multicenter, open-label study in 3 centers in France.

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Use of patient-held information about medication (PHIMed) to support medicines optimisation: protocol for a mixed-methods descriptive study

et al. 2018

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IntroductionRisks of poor information transfer across health settings are well documented, particularly for medication. There is also increasing awareness of the importance of greater patient activation. Patients may use various types of patient-held information about medication (PHIMed) to facilitate medication transfer, which may be paper or electronic. However, it is not known how PHIMed should best be used, whether it improves patient outcomes, nor is its key ‘active ingredients’ known. Discussion with patients and carers has highlighted this as a priority for research. We aim to identify how PHIMed is used in practice, barriers and facilitators to its use and key features of PHIMed that support medicines optimisation in practice.Methods and analysisThis study will take place in Greater London, England. We will include patients with long-term conditions, carers and healthcare professionals. The study has four work packages (WPs). WP1 involves qualitative interviews with healthcare professionals (n=16) and focus groups with patients and carers (n=20), including users and non-users of PHIMed, to study perceptions around its role, key features, barriers and facilitators, and any unintended consequences. WP2 will involve documentary analysis of how PHIMed is used, what is documented and read, and by whom, in a stratified sample of 60 PHIMed users. In WP3, we will carry out a descriptive analysis of PHIMed tools used/available, both electronic and paper, and categorise their design and key features based on those identified in WP1/2. Finally, in WP4, findings from WPs 1–3 will be integrated and analysed using distributed cognition as a theoretical framework to explore how information is recorded, transformed and propagated among different people and artefacts.Ethics and disseminationThe study has National Health Service ethics approval. It will provide initial recommendations around the present use of PHIMed to optimise patient care for patients, carers and healthcare professionals.

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Developing a handheld record for patients with cystic fibrosis

Cited by 3 publications

References 10 publications

How can patient-held lists of medication enhance patient safety? A mixed-methods study with a focus on user experience

How can patient-held lists of medication enhance patient safety? A mixed-methods study with a focus on user experience

A Participatory Approach Involving Patients with Cystic Fibrosis and Healthcare Professionals for the Co-Design of an Adherence-Enhancing Intervention Toolkit

Use of patient-held information about medication (PHIMed) to support medicines optimisation: protocol for a mixed-methods descriptive study

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