Healthcare in a land called PeoplePower: nothing about me without me

Delbanco, Thomas L.; Berwick, DM; Ji, Boufford; Edgman‐Levitan, Susan; Ollenschläger, Günter; Plamping, D; Rg, Rockefeller

doi:10.1046/j.1369-6513.2001.00145.x

Cited by 151 publications

(73 citation statements)

References 10 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…This goal is at the root of the learning health care system. 37,38 As embodied in the PeoplePower movement's mantra, "Nothing about me without me", 39 perhaps providers and their patients can agree proactively on the key data needed by various members of the health care team and work to increase the availability of those data to the right providers at the right time. In the end, both patients and providers want the same thing: the highest quality, most cost-effective care that is acceptable to the patient.…”

Section: Discussionmentioning

confidence: 99%

Provider Responses to Patients Controlling Access to their Electronic Health Records: A Prospective Cohort Study in Primary Care

et al. 2014

View full text Add to dashboard Cite

INTRODUCTION:Applying Fair Information Practice principles to electronic health records (EHRs) requires allowing patient control over who views their data. METHODS: We designed a program that captures patients' preferences for provider access to an urban health system's EHR. Patients could allow or restrict providers' access to all data (diagnoses, medications, test results, reports, etc.) or only highly sensitive data (sexually transmitted infections, HIV/AIDS, drugs/alcohol, mental or reproductive health). Except for information in free-text reports, we redacted EHR data shown to providers according to patients' preferences. Providers could "break the glass" to display redacted information. We prospectively studied this system in one primary care clinic, noting redactions and when users "broke the glass," and surveyed providers about their experiences and opinions. RESULTS: Eight of nine eligible clinic physicians and all 23 clinic staff participated. All 105 patients who enrolled completed the preference program. Providers did not know which of their patients were enrolled, nor their preferences for accessing their EHRs. During the 6-month prospective study, 92 study patients (88 %) returned 261 times, during which providers viewed their EHRs 126 times (48 %). Providers "broke the glass" 102 times, 92 times for patients not in the study and ten times for six returning study patients, all of whom had restricted EHR access. Providers "broke the glass" for six (14 %) of 43 returning study patients with redacted data vs. zero among 49 study patients without redactions (p=0.01). Although 54 % of providers agreed that patients should have control over who sees their EHR information, 58 % believed restricting EHR access could harm provider-patient relationships and 71 % felt quality of care would suffer. CONCLUSIONS: Patients frequently preferred restricting provider access to their EHRs. Providers infrequently overrode patients' preferences to view hidden data. Providers believed that restricting EHR access would adversely impact patient care. Applying Fair Information Practice principles to EHRs will require balancing patient preferences, providers' needs, and health care quality.KEY WORDS: fair information practices; electronic health records; patient preferences; quality of care.

show abstract

Section: Discussionmentioning

confidence: 99%

Provider Responses to Patients Controlling Access to their Electronic Health Records: A Prospective Cohort Study in Primary Care

et al. 2014

View full text Add to dashboard Cite

show abstract

“…12 The ethical argument for PPI grew and was taken up by policy-makers as characterised by the phrase 'nothing about me without me'. 13 Politically, PPI is also seen as a way of addressing the democratic deficit by giving voice to the public in publicly funded health organisations and research.…”

Section: Stage 3: Case Studiesmentioning

confidence: 99%

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Wilson

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

230

281

View full text Add to dashboard Cite

BackgroundPatient and public involvement (PPI) is a prerequisite for many funding bodies and NHS research ethics approval. PPI in research is defined as research carried out with or by the public rather than to, about or for them. While the benefits of PPI have been widely discussed, there is a lack of evidence on the impact and outcomes of PPI in research.ObjectivesTo determine the types of PPI in funded research, describe key processes, analyse the contextual and temporal dynamics of PPI and explore the experience of PPI in research for all those involved. Mechanisms contributing to the routine incorporation of PPI in the research process were assessed, the impact of PPI on research processes and outcomes evaluated, and barriers and enablers to effective PPI identified.DesignA three-staged realist evaluation drawing on Normalisation Process Theory to understand how far PPI was embedded within health-care research in six areas: diabetes mellitus, arthritis, cystic fibrosis, dementia, public health and learning disabilities. The first two stages comprised a scoping exercise and online survey to chief investigators to assess current PPI activity. The third stage consisted of case studies tracked over 18 months through interviews and document analysis. The research was conducted in four regions of England.ParticipantsNon-commercial studies currently running or completed within the previous 2 years eligible for adoption on the UK Clinical Research Network portfolio. A total of 129 case study participants included researchers and PPI representatives from 22 research studies, and representatives from funding bodies and PPI networks.ResultsIn the scoping 51% (n = 92) of studies had evidence of PPI and in the survey 79% (n = 80), with funder requirements and study design the strongest influence on the extent of PPI. There was little transparency about PPI in publicly accessible information. In case studies, context–mechanism–outcome configurations suggested that six salient actions were required for effective PPI. These were a clear purpose, role and structure for PPI; ensuring diversity; whole research team engagement with PPI; mutual understanding and trust between the researchers and lay representatives; ensuring opportunities for PPI throughout the research process; and reflecting on, appraising and evaluating PPI within a research study. PPI models included a ‘one-off’ model with limited PPI, a fully intertwined model in which PPI was fully embedded and an outreach model with lay representatives linking to broader communities. Enabling contexts included funder, topic/design, resources, research host, organisation of PPI and, most importantly, relationships. In some case studies, lack of coherence in defining PPI persisted, with evidence of a dual role of PPI representative/study participant. Evidence of PPI outcomes included changes to study design, improvements to recruitment materials and rates, and dissemination.ConclusionsSix salient actions were required for effective PPI and were characterised by a shared understanding of moral and methodological purposes of PPI, a key individual co-ordinating PPI, ensuring diversity, a research team positive about PPI input and fully engaged with it, based on relationships that were established and maintained over time, and PPI being evaluated in a proactive and systematic approach. Future work recommendations include exploring the impact of virtual PPI, cost analysis and economic evaluation of the different models of PPI, and a longer-term follow-up study of the outcomes of PPI on research findings and impact on services and clinical practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

show abstract

“…16 It calls for levels of transparency and participation uncharacteristic of most health care systems.…”

Section: Pedigree Of Patient-centerednessmentioning

confidence: 99%

What ‘Patient-Centered’ Should Mean: Confessions Of An Extremist

2009

Self Cite

View full text Add to dashboard Cite

"Patient-centeredness" is a dimension of health care quality in its own right, not just because of its connection with other desired aims, like safety and effectiveness. Its proper incorporation into new health care designs will involve some radical, unfamiliar, and disruptive shifts in control and power, out of the hands of those who give care and into the hands of those who receive it. Such a consumerist view of the quality of care, itself, has important differences from the more classical, professionally dominated definitions of "quality." New designs, like the so-called medical home, should incorporate that change.

show abstract

Healthcare in a land called PeoplePower: nothing about me without me

Cited by 151 publications

References 10 publications

Provider Responses to Patients Controlling Access to their Electronic Health Records: A Prospective Cohort Study in Primary Care

Provider Responses to Patients Controlling Access to their Electronic Health Records: A Prospective Cohort Study in Primary Care

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

What ‘Patient-Centered’ Should Mean: Confessions Of An Extremist

Contact Info

Product

Resources

About