Do consultants do what they say they do? Observational study of the extent to which clinicians involve their patients in the decision-making process

ObjectivesTo assess whether consultants do what they say they do in reaching decisions with their patients.DesignCross-sectional analysis of hospital outpatient encounters, comparing consultants’ self-reported usual decision-making style to their actual observed decision-making behaviour in video-recorded encounters.SettingLarge secondary care teaching hospital in the Netherlands.Participants41 consultants from 18 disciplines and 781 patients.Primary and secondary outcome measureWith the Control Preference Scale, the self-reported usual decision-making style was assessed (paternalistic, informative or shared decision making). Two independent raters assessed decision-making behaviour for each decision using the Observing Patient Involvement (OPTION)5 instrument ranging from 0 (no shared decision making (SDM)) to 100 (optimal SDM).ResultsConsultants reported their usual decision-making style as informative (n=11), shared (n=16) and paternalistic (n=14). Overall, patient involvement was low, with mean (SD) OPTION5 scores of 16.8 (17.1). In an unadjusted multilevel analysis, the reported usual decision-making style was not related to the OPTION5 score (p>0.156). After adjusting for patient, consultant and consultation characteristics, higher OPTION5 scores were only significantly related to the category of decisions (treatment vs the other categories) and to longer consultation duration (p<0.001).ConclusionsThe limited patient involvement that we observed was not associated with the consultants’ self-reported usual decision-making style. Consultants appear to be unconsciously incompetent in shared decision making. This can hinder the transfer of this crucial communication skill to students and junior doctors.

Lessons learned on the experienced facilitators and barriers of implementing a tailored VBHC model in a Dutch university hospital from a perspective of physicians and nurses

ObjectiveThis study aims to obtain insight into experienced facilitators and barriers of implementing a tailored value-based healthcare (VBHC) model in a Dutch university hospital from a perspective of physicians and nurses.MethodA descriptive qualitative study with 12 physicians, nurses and managers of seven different care pathways who were involved in the implementation of a tailored VBHC methodology was conducted. Thematic content analysis was used to analyse the data guided by all factors of the Consolidated Framework for Implementation Research (CFIR).FindingsThe method designed for the implementation of a tailored VBHC methodology was appointed as a structured guide for the process. Throughout the implementation process, leadership and team dynamics were considered as important for the implementation to succeed. Also, sharing experiences with other value teams and the cooperation with external Information Technology (IT) teams in the hospital was mentioned as desirable. The involvement of patients, that is part of the VBHC methodology, was considered useful in the decision-making and improvement of the care process because it gave better insights in topics that are important for patients. The time-consuming nature of the implementation process was named as barrier to the VBHC methodology. On top of that, the shaping of the involvement of patients and the ongoing changes in departments were established as difficult. Finally, working with the Electronic Health Records and acquiring the necessary digital skills were considered to be often forgotten and, thus, hindering implementation.ConclusionClinical Healthcare organisations implementing a tailored VBHC methodology will benefit from the use of a structured implementation methodology, a well-led strong team and cooperation with (external) teams and patients. However, shaping patient involvement, alignment with other departments and attention to digitisation were seen as a most important concerns in implementation and require further attention.

The challenge of involving old patients with polypharmacy in their medication during hospitalization in a medical emergency department: An ethnographic study

Background More than 70% of patients admitted to emergency departments (EDs) in Denmark are older patients with multimorbidity and polypharmacy vulnerable to adverse events and poor outcomes. Research suggests that patient involvement and shared decision-making (SDM) could optimize the treatment of older patients with polypharmacy. The patients become more aware of potential outcomes and, therefore, often tend to choose less medication. However, implementing SDM in clinical practice is challenging if it does not fit into existing workflows and healthcare systems. Aim The aim was to explore the determinants of patient involvement in decisions made in the ED about the patient’s medication. Methods The design was a qualitative ethnographic study. We observed forty-eight multidisciplinary healthcare professionals in two medical EDs focusing on medication processes and patient involvement in medication. Based on field notes, we developed a semi-structured interview guide. We conducted 20 semi-structured interviews with healthcare professionals to elaborate on the findings. Data were analyzed with thematic analyses. Findings We found five themes (determinants) which affected patient involvement in decisions about medicine in the ED: 1) blurred roles among multidisciplinary healthcare professionals, 2) older patients with polypharmacy increase complexity, 3) time pressure, 4) faulty IT- systems, and 5) the medicine list as a missed enabler of patient involvement. Conclusion There are several barriers to patient involvement in decisions about medicine in the ED and some facilitators. A tailored medication conversation guide based on the SDM methodology combined with the patient’s printed medicine list and well-functioning IT- systems can function as a boundary object, ensuring the treatment is optimized and aligned with the patient’s preferences and goals.

The Role of EUPATI CH in Promoting Patient Involvement in Clinical Research: A Multi-Stakeholder Research Project

Background: The European Patients' Academy on Therapeutic Innovation Switzerland (EUPATI CH) was established as an association in 2016 with the mission to improve patient empowerment in Switzerland, raise public awareness of EUPATI's education material, and foster multi-stakeholder partnerships in order to promote public involvement in all aspects of medicines research and development (R&amp;D). In order to achieve its goal of improving patient involvement (PI) in all processes of medicines R&amp;D in Switzerland and to obtain guidance and recommendations for future activities, EUPATI CH initiated a multi-stakeholder survey on PI experiences, hurdles, and best practices. The survey enabled EUPATI CH to obtain and analyze the views of various stakeholders and shape its workplan.Methods: Data collection occurred between January and July 2019 using a survey and semi-structured interviews with individual stakeholders from different groups. The online survey responses were analyzed using quantitative methods and the interviews were analyzed using qualitative methods.Results: The online survey was completed by 55 respondents (10%), and the semi-structured interviews were conducted with 14 stakeholders. Respondents to the online survey were patient representatives (45%), researchers from academia (25%), individuals from the pharmaceutical industry (9%), healthcare professionals (23%), and representatives from government agencies (6%). Some respondents were also members of EUPATI CH. Thirty-eight percent of respondents consider PI in Switzerland to be limited or absent. They identified the main barriers to PI as, first and foremost, a lack of funds and human resources (65%), followed by a lack of information and a lack of education on how to become a patient advocate (21%), a lack of collaboration with other stakeholders (16%), and a lack of adequate resources. Respondents' expectations of EUPATI CH's role in supporting PI were to provide education for active PI and improve networking and collaboration among stakeholders.Conclusions: EUPATI CH's multi-stakeholder research identified some of the difficulties in promoting PI in medicines R&amp;D in Switzerland, in particular the complex collaboration among stakeholders and a lack of funds, human resources, and knowledge. To respond to these difficulties, EUPATI CH has begun preparing a basic training course for patients that is adapted to Switzerland.

Innovative Patient Involvement During Covid-19: Keeping Patients at the Heart of HTA

The COVID-19 pandemic and lockdown measures in the United Kingdom resulted in significant challenges and created opportunities for innovation to keep patients at the heart of HTA. The introduction of the Coronavirus Act 2020 and the associated public health guidance meant that NICE's conventional HTA methods were no longer feasible. NICE introduced rapid, innovative updates to patient and public involvement (PPI), decision-making meetings, and consultations to harness the expertise of patients and the public to ensure guidance addressed the expected concerns and identified barriers which could impact access. This article describes the PPI support for NICE's rapid shift to virtual meetings and virtual engagement. We utilize the authors' experience and patient and public contributor feedback to understand the experience of participating in a virtual setting and identify four themes: accessibility; inclusivity; transparency; and intrapersonal relationships and committee dynamics. The article also considers how patient representatives participated in, and facilitated, the development of guidance for a hypothetical technology to keep patients and the public at the heart of expedited and novel HTA processes to identify and understand the expected patient concerns and potential barriers for when a technology would be introduced.

A framework for action to improve patient and public involvement in health technology assessment

Background Patient and public involvement (PPI) in the Brazilian Health Technology Assessment (HTA) process occurs in response to a legislative mandate for “social participation.” This resulted in some limited patient participation activities, and, therefore, a more systematic approach was needed. The study describes the development of a suggested framework for action to improve PPI in HTA. Methods This work used formal methodology to develop a PPI framework based on three-phase mixed-methods research with desktop review of Brazilian PPI activities in HTA; workshop, survey, and interviews with Brazilian stakeholders; and a rapid review of international practices to enact effective patient involvement. Patient partners reviewed the draft framework. Results According to patient group representatives, their involvement in the Brazilian HTA process is important but could be improved. Different stakeholders perceived barriers, identified values, and made suggestions for improvement, such as expansion of communication, capacity building, and transparency, to support more meaningful patient involvement. The international practices identified opportunities for earlier, more active, and collaborative PPI during all HTA stages, based on values and principles that are relevant for Brazilian patients and the public. These findings were synthesized to design a framework that defines and systematizes actions to support PPI in Brazil, highlighting the importance of evaluating these strategies. Conclusions Since the publication of this framework, some of its suggestions are being implemented in the Brazilian HTA process to improve PPI. We encourage other HTA organizations to consider a systematic and planned approach with regular evaluation when pursuing or strengthening involvement practices.