Certified Patient Decision Aids: Solving Persistent Problems with Informed Consent Law

Pope, Thaddeus Mason

doi:10.1177/1073110517703097

Cited by 33 publications

(17 citation statements)

References 76 publications

(60 reference statements)

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“…Patient-centered care is defined as respectful, responsive care that incorporates patient needs and values [4]. Shared decision-making (SDM) is an interpersonal process where provider(s) and patient collaborate to make decisions using best available evidence as well as patient preferences and lived experience [2][3][4][5][6][7][8][9][10]. Both patient-centered care and SDM are integral components of enhanced patient experience.…”

Section: Introductionmentioning

confidence: 99%

Experiences of shared decision-making in community rehabilitation: a focused ethnography

Manhas

Olson

Churchill

et al. 2020

BMC Health Serv Res

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Background: Shared decision-making (SDM) can advance patient satisfaction, understanding, goal fulfilment, and patient-reported outcomes. We lack clarity on whether this physician-focused literature applies to community rehabilitation, and on the integration of SDM policies in healthcare settings. We aimed to understand patient and provider perceptions of shared decision-making (SDM) in community rehabilitation, particularly the barriers and facilitators to SDM. Methods: We used a focused ethnography involving 14 community rehabilitation sites across Alberta, including rural, regional-urban and metropolitan-urban sites. We conducted semi-structured interviews that asked participants about their positive and negative communication experiences (n = 23 patients; n = 26 providers). Results: We found SDM experiences fluctuated between extremes: Getting Patient Buy-In and Aligning Expectations. The former is provider-driven, prescriptive and less flexible; the latter is collaborative, inquisitive and empowering. In Aligning Expectations, patients and providers express humility and openness, communicate in the language of ask and listen, and view education as empowering. Patients and providers described barriers and facilitators to SDM in community rehabilitation. Facilitators included geography influencing context and connections; consistent, patientspecific messaging; patient lifestyle, capacity and perceived outlook; provider confidence, experience and perceived independence; provider training; and perceptions of more time (and control over time) for appointments. SDM barriers included lack of privacy; waitlists and financial barriers to access; provider approach; how choices are framed; and, patient's perceived assertiveness, lack of capacity, and level of deference. Conclusions: We have found both excellent experiences and areas for improvement for applying SDM in community rehabilitation. We proffer recommendations to advance high-quality SDM in community rehabilitation based on promoting facilitators and overcoming barriers. This research will support the spread, scale and evaluation of a new Model of Care in rehabilitation by the provincial health system, which aimed to promote patient-centred care.

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Section: Introductionmentioning

confidence: 99%

Experiences of shared decision-making in community rehabilitation: a focused ethnography

Manhas

Olson

Churchill

et al. 2020

BMC Health Serv Res

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“…Certification such as CE marking may support implementation by ensuring that the PDA meets well-established quality standards. This provides incentives for clinicians, hospital administrators, patients and insurers to use them in practice (36).…”

Section: Recommendation 5: Obtain a Certification Markmentioning

confidence: 99%

Nine Recommendations for Decision Aid Implementation from the Clinician Perspective

Ankolekar

Vanneste

Gurp

et al. 2020

Preprint

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Background Shared decision-making (SDM) aims to empower patients to take an active role in their treatment choices, supported by clinicians and patient decision aids (PDAs). The purpose of this study is to explore barriers and possible facilitators to SDM and a PDA in the prostate cancer trajectory. In the process we identify possible actions that organizations and individuals can take to support implementation in practice. Methods We use the Ottawa Model of Research Use as a framework to determine the barriers and facilitators to SDM and PDAs from the perspective of clinicians. Semi-structured interviews were conducted with urologists (n = 4), radiation oncologists (n = 3), and oncology nurses (n = 2), focusing on the current decision-making process experienced by these stakeholders. Questions included their attitudes towards SDM and PDAs, barriers to implementation and possible strategies to overcome them. Results Time pressure and patient characteristics were cited as major barriers by 55% of the clinicians we interviewed. Structural factors such as external quotas for certain treatment procedures were also considered as barriers by 44% of the clinicians. Facilitating factors involved organizational changes to embed PDAs in the treatment trajectory, training in using PDAs as a tool for SDM, and clinician motivation by disseminating positive clinical outcomes. Our findings also suggest a role for external stakeholders such as healthcare insurers in creating economic incentives to facilitate implementation. Conclusion Our findings highlight the importance of a multi-faceted implementation strategy to support SDM. While clinician motivation and patient activation are essential, structural/economic barriers may hamper implementation. Action must also be taken at the administrative and policy levels to foster a collaborative environment for SDM and in the process for PDAs.

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“…Although attractive in theory, informed consent has not truly allowed patients to make informed decisions about their diagnoses and treatments to match their preferences. 431 The failure rate for actually understanding informed consent forms is greater than ninety percent. 432 Patients cannot express their preferences if they do not fully comprehend the potential procedures, thereby obviating the "informed" aspect of their consent.…”

Section: A Informed Consentmentioning

confidence: 99%

The Captive Lab Rat: Human Medical Experimentation in the Carceral State

Appleman

2019

SSRN Journal

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Human medical experimentation upon captive, vulnerable subjects is not a relic of our American past. It is part of our present. The extensive history of medical experimentation on the disabled, the poor, the mentally ill, and the incarcerated has been little explored. Its continuance has been even less discussed, especially in the legal literature. The standard narrative of human medical experimentation ends abruptly in the 1970s, with the uncovering of the Tuskegee syphilis study. My research shows, however, that this narrative is incorrect and incomplete. The practice of experimenting on the captive and vulnerable persists. Our current approach to human medical experimentation disregards informed consent and privacy, allowing the pharmaceutical and medical industries to play an outsized role in shaping clinical research. The confusing amalgam of laws, rules, and codes loosely governing such research almost entirely fails to regulate or prevent patient mistreatment and abuse. Acquiring a true understanding of our system of mass incarceration requires us to unearth the hidden contours of our current experiments on the poor, the disabled, and the confined, and calls for a wholesale revision of the flawed legal and medical regime overseeing human medical experimentation.

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Certified Patient Decision Aids: Solving Persistent Problems with Informed Consent Law

Cited by 33 publications

References 76 publications

Experiences of shared decision-making in community rehabilitation: a focused ethnography

Experiences of shared decision-making in community rehabilitation: a focused ethnography

Nine Recommendations for Decision Aid Implementation from the Clinician Perspective

The Captive Lab Rat: Human Medical Experimentation in the Carceral State

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