Chronic Disease Decision Making and “What Matters Most”

Fried, Terri R.; Street, Richard L.; Cohen, Andrew

doi:10.1111/jgs.16371

Cited by 16 publications

(17 citation statements)

References 19 publications

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“…Goals are here understood as a desired future state of affairs towards which effort and resources are directed [28]. In transitional care for the older chronically ill, fragmentation and conflicting care goals represent a core challenge [14,29]. Both in case of conflicting goals or complementary goals that compete for resources, a competent prioritization of goals is called for [28,30,31].…”

Section: Conceptual Frameworkmentioning

confidence: 99%

“…If HCPs perceive that their responsibility is limited to improving the physical function and independence of the patient, then the WMTY question might be framed accordingly. However, patient-centered goal setting aims toward including multiple dimensions of the older patient's life [14,24,25], and effective chronic care management seems to necessitate moving care into the context of the person's life project [29,33]. In the relational approach, there seemed to be a perception that HCPs are responsible for more than disease and function.…”

Section: What Matters To the Patient Or What Matters To The Professiomentioning

confidence: 99%

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What matters when asking, “what matters to you?” — perceptions and experiences of health care providers on involving older people in transitional care

Olsen

Bergland

Bye

et al. 2020

BMC Health Serv Res

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Background: Transitional care for older chronically ill people is an important area for healthcare quality improvement. A central goal is to involve older people more in transitional care and make care more patient-centered. Recently, asking, "What matters to you?" (WMTY) has become a popular way of approaching the implementation of patientcentered care. The aim of this study was to explore health care providers' perceptions and experiences regarding the question of WMTY in the context of improving transitional care for older, chronically ill persons. Methods: The data comprise semi-structured individual interviews with 20 health care providers (HCPs) who took part in a Norwegian quality improvement collaborative, three key informant interviews, and observations of meetings in the quality improvement collaborative. We used a thematic analysis approach. Results: Three interrelated themes emerged from the analysis: WMTY is a complex process that needs to be framed competently; framing WMTY as a functional approach; and framing WMTY as a relational approach. There was a tension between the functional and the relational approach. This tension seemed to be based in different understandings of the purpose of asking the WMTY question and the responsibility that comes with asking it. Conclusions: WMTY may appear as a simple question, but using it in everyday practice is a complex process, which requires professional competence. When seen in terms of a patient-centered goal process, the challenge of competently eliciting older people's personal goals and transferring these goals into professional action becomes evident. An important factor seems to be how HCPs regard the limits of their responsibility in relation to giving care within the larger frame of the patient's life project. Factors in the organizational and political context also seem to influence substantially how HCPs approach older patients with the WMTY question.

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Section: Conceptual Frameworkmentioning

confidence: 99%

Section: What Matters To the Patient Or What Matters To The Professiomentioning

confidence: 99%

What matters when asking, “what matters to you?” — perceptions and experiences of health care providers on involving older people in transitional care

Olsen

Bergland

Bye

et al. 2020

BMC Health Serv Res

View full text Add to dashboard Cite

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“…They would be disappointed, but not surprised, that even the most patient-centred professionals are drawn to model-first thinking because it seems to potentiate efficient and rational shared decision making. 70,71 The intersection of DA and EBM has produced an admixture. Current advocates have either embraced it wholeheartedly or attributed its deleterious aspects to industrialization.…”

Section: The Unmet Challengementioning

confidence: 99%

“…The pioneers of EBM warned us about this prospect. They would be disappointed, but not surprised, that even the most patient‐centred professionals are drawn to model‐first thinking because it seems to potentiate efficient and rational shared decision making 70,71 …”

Section: The Unmet Challengementioning

confidence: 99%

Evidence‐based medicine's curious path: From clinical epidemiology to patient‐centered care through decision analysis

Falzer

2020

Evaluation Clinical Practice

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Evidence-based medicine (EBM), one of the most important movements in health care, has been a lightning rod for controversy. Conflicts about the meaning and value of EBM are owing in part to lack of clarity about basic questions regarding its development, the importance of expertise and intuition, and the role of evidence in clinical decision making. These issues have persisted in part because of unclarity at the outset, but also because of how EBM evolved, why it was introduced when it was, and how it was modified following its introduction. This paper traces the evolution of EBM from clinical epidemiology (CE) and the internal dispute that precipitated the developers to establish EBM as a distinct approach to clinical practice. The paper proposes that health care industrialization also had a significant role in EBM's emergence and that industrialization influenced the decision to merge EBM with the method of normative decision making known as decision analysis (DA). The paper discusses the impact of this merger, in particular how it led to EBM's identification with managed care and has added momentum to the effort at forging a connection between a normative decision model and clinical judgement. This effort would turn clinical decision making into a conduit for bringing administrative rules and regulations into the consulting room and would result in expertise becoming a surplus skill. The paper closes by discussing a challenge yet unmet by EBM's advocates and critics-to chronicle the dangers that EBM in the framework of DA during the current era of industrialization poses to health and health care, and discover ways of unhinging the relationship between model and judgement.

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“…Involving older patients and their family members in shared decision making and clinical care has been described in a variety of setups [1][2][3][4][5], and numerous reviews describe how older patients can be involved in research [6][7][8]. However, it remains unsettled how to best involve older, frail patients in geriatric research processes [9].…”

Section: Introductionmentioning

confidence: 99%

Involving frail older patients in identifying outcome measures for transitional care—a feasibility study

et al. 2021

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Background During care transitions, the older (75+) patient’s agenda can easily be missed. To counteract this, involving patients in shared clinical decision making has proven to be of great value. Likewise, involving patients and other stakeholders as researchers is gaining ground. Patient and public involvement (PPI) in research entails many benefits, for example, by bringing further insight from those with lived experiences of being ill. There are various challenges associated with involving some older patients, for example frailty, cognitive impairment and other chronic illnesses. To the best of our knowledge, there are only a few examples of initiatives involving older patients beyond research participation. The feasibility of involving frail older patients during an ongoing care transition from hospital to primary health care remains unknown. To investigate the feasibility of including older frail patients, their relatives and health care professionals (HCPs) as co-researchers, we established a study with increasingly demanding levels of patient involvement to identify relevant outcome measures for future transitional care research. Methods The study was a pragmatic, qualitative feasibility study. The involved individuals were frail older patients, their relatives and HCPs. Patients and their relatives were interviewed, while the interviewer made reflective notes. A thematic analysis was made. Relatives and HCPs discussed the themes to identify relevant outcome measures and potentially co-create new patient-reported outcome measures (PROMs) for use in future transitional care studies. The feasibility was evaluated according to six involvement steps. The level of involvement was evaluated using the five-levelled Health Canada Public Involvement Continuum (HCPIC). Results In total, eight patients, five relatives and three HCPs were involved in the study. Patients were involved in discussing care transitions (HCPIC level 3), while some relatives were engaged (HCPIC level 4) in forming PROMs. The partnership level of involvement (HCPIC level 5) was not reached. The thematic analysis and the subsequent theme discussion successfully formed PROMs. The key PROMs were related to care, transparency and the relatives’ roles in the transitional care process. Conclusions When applying a pragmatic involvement approach, frail older patients can be successfully involved in identifying relevant transitional care outcome measures; however, involving these patients as fellow researchers seems infeasible. To maintain involvement, supportive relatives are essential. Useful experiences for future research involvement of this vulnerable group were reported, arguing that patient participation has the potential to become inherent in future geriatric research.

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Chronic Disease Decision Making and “What Matters Most”

Cited by 16 publications

References 19 publications

What matters when asking, “what matters to you?” — perceptions and experiences of health care providers on involving older people in transitional care

What matters when asking, “what matters to you?” — perceptions and experiences of health care providers on involving older people in transitional care

Evidence‐based medicine's curious path: From clinical epidemiology to patient‐centered care through decision analysis

Involving frail older patients in identifying outcome measures for transitional care—a feasibility study

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