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Empowering People to Health Speak Up about Safety EPHESUS in promary care
Empowering People to Help Speak Up about Safety (EPHESUS) in Primary Care
7 November 2016
01 February 2016
30 September 2016
Multimorbidity, primary care, safety, polypharmacy, coproduction, codesign
- Dr Sarah Knowles, Research fellow Alliance Manchester Business School - People, Management and Organisation Division, University of Manchester
- Dr Gavin Daker-White, Research Fellow, Division of Population Health, Health Services Research & Primary Care, University of Manchester
Professor Peter Bower, Chair in Health Sciences, Division of Population Health, Health Services Research & Primary Care
University of Manchester
Dr Caroline Sanders, Reader in Medical Sociology, Division of Population Health, Health Services Research & Primary Care University of Manchester
Ms Rebecca Hays - Research Associate and NIHR Doctoral Research Fellow, Division of Population Health, Health Services Research & Primary Care, University of Manchester
Dr Louise Locock – Honorary Associate Professor, Nuffield Department of Primary Care Health Sciences, University of Oxford
Dr JoanneProtheroe –Professor of General Practice, Primary Care and Health Sciences, University of Keele
- Dr Hugo Senra previously faculty of medical science Unversiy of Manchester (Currently Senior Lecturer Psychology Anglia Ruskin University)
To synthesise existing qualitative and quantitative data with co-design materials and use them to support patients and health professionals to collaboratively design new healthcare solutions in the high priority areas of safety and multimorbidity.
Multimorbidity poses many challenges to patients and professionals, with implications for the quality and safety of care received. Patients perceive threats to safety in broad terms, encompassing a lack of continuity of care and disrupted communication (Daker-White et al., in submission). Efforts to develop new interventions (such as those in the MRC Framework for Complex Interventions) need to be based on up-to-date evidence, but also must be responsive to patients’ own needs and preferences. Developing methods to meet these goals is crucial to achieving the NIHR aim of ‘generating innovative new healthcare solutions (http://www.nihr.ac.uk/research/)’.
Stage 1. Data from multiple existing studies being undertaken by the co-applicants will be synthesised to identify core patient needs and identify challenges to providing high quality and safe care in existing services. Data from the Healthtalk archive will be used to create a ‘trigger film’ of patient experiences.
Stage 2. Primary care health professionals and patients with multimorbidity will be recruited to co-design workshops, following the principles of Accelerated Experience Based Co-design (AEBCD). Design science methods (persona and scenario materials) will be presented along with the trigger film to support participants to reflect on challenges and identify innovative solutions to improve care.
Outputs: The solutions proposed in Stage 2 will be translated into independent funding proposals to formally evaluate their effectiveness and cost effectiveness.
The project will also evaluate the process, to determine whether multiple data sets can be effectively translated into co-design materials that enable patients and professionals to effectively input into the design of novel interventions, to produce ideas which are feasible, acceptable and patient-centred.
The project will model a process of:
- Synthesising multiple relevant data sources into usable design materials (personas, scenarios, and experience narratives).
- Delivering workshops with staff and service users, based on principles on accelerated experience-based co-design and utilising the materials from step 1, to identify appropriate, feasible and patient-centred candidates for novel interventions or changes to service delivery.
- Integrating the workshop and academic outputs to create proposals for external funding to test new interventions to address safety in multimorbidity.
Stage 1: Production of codesign materials.
Consistent with the aims of the protocol, we produced the following materials to support the codesign process, through synthesis of existing qualitative data on experience of mulitmorbidity:
- ‘Trigger film’ (as used in Accelerated Experience Based CoDesign), produced in collaboration with Healthtalk, featuring video extracts of real patients discussing their experiences of multimorbidity.
- ‘Persona’ and ‘Scenario’ materials featuring a prototypical patient with multimorbidity and indicating potential safety problems. The ‘persona’ presented a narrative of a patient with multimorbidity and the issues encountered. This was presented to participants in the first and second workshops to provide a shared focus for discussion of safety and provoke suggestions for how patients could be better supported. These suggestions were then translated into ‘scenarios’ which provided narrative descriptions of three of the suggestions to model how they would work in practice. These were presented in workshop three, for participants to reflect on and consider whether they would be helpful and feasible.
Stage 2: Codesign workshops.
The first workshop was conducted solely with patients and service users, and was attended by 11 participants who self-identified as experiencing multimorbidity. The second workshop was conducted solely with professionals recruited through Greater Manchester Patient Safety Translational Research Centre networks, and was attended by five professionals - one GP, three Pharmacists and one Pharmacy Dispenser. The final workshop was intended to be collaborative with both patients and professionals attending. All participants of the previous two workshops were invited. The workshop was attended by two professionals (one pharmacist, one pharmacy dispenser) and nine patients.
Reaction to the design materials was positive. Both the trigger film and the persona and scenario materials provoked the desired discussion around safety in primary care. The process was acceptable to both patients and professionals. The co-design process proved to be helpful and feasible, although it requires substantial facilitation and it proved challenging to recruit health professionals.
The workshop outputs are currently being analysed. We are employing the Burden of Treatment model to analyse and present the workshop outputs (the reactions and suggestions of the participants) and identify candidate interventions that could be developed and evaluated in future grants. We are also collating data from an evaluation survey of attendees and reflections of the workshop facilitators to summarise the advantages and disadvantages of the process employed and provide suggestions for refinement of the process.
The primary focus in terms of potential safety incidents across all three workshops was around medication management and polypharmacy. There was consensus from both patients and professionals that interventions were needed which would:
- Take into account the capacity of the patient to understand and manage information around medications and their interactions, for example considering whether the patient has memory difficulties, and providing information about how to take medications appropriately in a way that is engaging and comprehensible and checks the understanding of the patient.
- Proactively offer support to the patient and encourage discussion around side effects and treatment priorities. This should include better identification of patients who may be particularly vulnerable, for example considering patients who are older or have mental health problems.
- Incorporate timed reminders or other mechanisms to support patients to manage complex medication schedules.
The design materials and the workshop format were overall effective and acceptable to patients. Involving a service user facilitator could be helpful in future workshops to help focus participants on the materials. Running multiple workshops for staff (ensuring there are several available dates for them to attend) may ensure more professional views are included.
Plain English summary
‘Multimorbidity’ is the term used when patients have two or more long-term conditions at the same time. It can be more challenging to manage several conditions at the same time, especially if those conditions require different medications or different specialists to be involved. A particular concern is whether the safety of those patients is compromised, for example if taking multiple drugs leads to an unexpected reaction.
What did we do?
In the EPHESUS study, we brought together both patients and professionals (such as GPs and pharmacists) to suggest new ways of supporting people with multimorbidity to make sure their care is safe. We conducted “co-design” workshops using design materials called ‘personas’ and ‘scenarios’. The ‘persona’ presented a story about a person with multimorbidity, based on the findings from previous studies, to highlight common experiences and challenges. We conducted two workshops, one with patients and one with health professionals, where we presented the persona and asked the participants to think about ways the person could be better supported to manage their conditions and avoid safety issues occurring.
At the third and final workshop, we brought together patients and health professionals at the same time. We presented a ‘scenario’ which featured the original person from the persona being supported based on the suggestions from the first workshops, to help people think about how these might work in practice and refine the ideas about how best to support patients with multimorbidity in primary care.
What did we find?
Both patients and professionals focused on having to manage lots of different medications as the main potential safety problem. There was agreement that professionals need to be proactive in offering support to patients, for example identifying patients who might be most vulnerable, such as those who were older or who had mental health problems, making sure that the information given about medications is easy to understand, and that reminders to help people remember when and how to take medications would be useful.
We are currently putting together the findings from the workshops, to translate these into specific interventions that we can further develop and test in future studies. The workshops have meant that we can be confident that we are focusing on the safety issues that matter most to patients and professionals themselves, and that would be most useful and feasible in practice.
Knowles S , Hays R Senra H, Bower P, Locock L, Protheroe J Sanders C, Daker‐White G, Empowering people to help speak up about safety in primary care: Using codesign to involve patients and professionals in developing new interventions for patients with multimorbidity https://onlinelibrary.wiley.com/doi/abs/10.1111/hex.12648
A grant development group has been formed consisting of the applicants and other relevant University of Manchester staff to submit a grant focused on developing and evaluating interventions identified through the workshops. The submission will likely be to NIHR HSDR or NIHR Programme Development
We tested a novel form of patient and public involvement which:
- Employed specific co-design materials, to determine whether these supported collaborative development of intervention ideas.
- Brought both patients with multimorbidity and health professionals together to collaboratively discuss the ideas.
We found that the materials were effective in providing a shared focus for discussion and encouraging reflection around the main challenges to managing conditions that patients wanted help with and also encouraged a focus on whether the solutions proposed could be implemented in practice and how. It was challenging however to ensure that patients focused their comments on the materials and on suggestions for solving problems rather than just discussing problems they had experienced per se, although it should be noted that the materials were not intended to focus the discussion exclusively and it was expected that patients would and should reflect on their own personal experiences as well. However, in future workshops, it may be helpful to have a service user facilitator who can sensitively and appropriately encourage a focus on the materials when the discussions move too far away from the workshop aims (ie. The aim to consider potential interventions to address safety issues in primary care, rather than just to reflect on what safety issues might occur). The format of providing a third workshop where the suggestions from the first workshops were discussed proved very useful, as it highlighted further issues to be considered and enabled patients and professionals to clarify their earlier suggestions and reflect on how the original suggestions could work in practice.
Bringing patients and professionals together was acceptable to both groups. It proved challenging to recruit health professionals and meant the final workshop had an imbalance of participants (two health professionals and nine patients). Running several workshops, and thereby providing more time slots for contributions, may overcome this.
Link toNIHR School for Primary Care Research project information: https://www.spcr.nihr.ac.uk/projects/empowering-people-to-help-speak-up-about-safety-ephesus-in-primary-care
The project has provided a test of a novel form of collaborative design to support grant development, which can be shared across the SPCR network.
This project was funded by the National Institute for Health Research School for Primary Care Research (project number 259)
Department of Health Disclaimer
The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR School for Primary Care Research, NIHR, NHS or the Department of Health.