National Healthcare Quality and Disparities Report
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Topics
- Access to Care (1)
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- (-) Clinician-Patient Communication (52)
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- Registries (1)
- Research Methodologies (1)
- Sexual Health (1)
- Shared Decision Making (10)
- Skin Conditions (1)
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AHRQ Research Studies
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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
Results
1 to 25 of 52 Research Studies DisplayedWust KL, Carayon P, Werner NE
Older adult patients and care partners as knowledge brokers in fragmented health care.
This study explores the knowledge broker roles of older adult patients and their care partners during emergency department (ED) visits. The research concludes that patients and care partners serve as information liaisons between fragmented care systems, providing details on diagnostic testing, medications, health history, and care accommodations. They engage in proactive and reactive knowledge brokering within and across ED work systems, aiding in communication and care coordination to mitigate healthcare fragmentation.
AHRQ-funded; HS026624.
Citation: Wust KL, Carayon P, Werner NE .
Older adult patients and care partners as knowledge brokers in fragmented health care.
Hum Factors 2024 Mar; 66(3):701-13. doi: 10.1177/00187208221092847.
Keywords: Elderly, Emergency Department, Caregiving, Clinician-Patient Communication, Communication
Barwise AK, Curtis S, Diedrich DA
Using artificial intelligence to promote equitable care for inpatients with language barriers and complex medical needs: clinical stakeholder perspectives.
The objectives of this planned qualitative study were to use machine learning predictive analytics to identify patients with language barriers and complex medical needs in order to prioritize them for in-person interpreters. The authors conducted semi-structured interviews with clinicians, interpreters, and staff involved in caring for patients or organizing interpreters to understand perceived risks and benefits of artificial intelligence (AI) in this domain. Perceived risks included concerns about transparency, accuracy, redundancy, privacy, stigmatization among patients, alert fatigue, and supply-demand issues; perceived benefits included increased awareness of in-person interpreters, improved standard of care, and prioritization for interpreter utilization. They concluded that the use of AI to identify and prioritize patients for interpreter services has the potential to improve standard of care and address healthcare disparities among patients with language barriers.
AHRQ-funded; HS028475.
Citation: Barwise AK, Curtis S, Diedrich DA .
Using artificial intelligence to promote equitable care for inpatients with language barriers and complex medical needs: clinical stakeholder perspectives.
J Am Med Inform Assoc 2024 Feb 16; 31(3):611-21. doi: 10.1093/jamia/ocad224.
Keywords: Health Information Technology (HIT), Disparities, Communication, Clinician-Patient Communication
Semere W, Karter AJ, Lyles CR
Care partner engagement in secure messaging between patients with diabetes and their clinicians: cohort study.
This study based on a previous cohort study investigated secure messaging (SM) use among older diabetes patients, exploring the impact of care partners. Analyzing data from a large healthcare system's patient portal, proxy users, mainly older and with lower education, showed higher SM engagement. They initiated SM sooner, had more exchanges, yet didn't bridge existing disparities. Proxy involvement may enhance patient-clinician communication in diabetes care, warranting further research on its impact on clinical outcomes.
AHRQ-funded; HS027844.
Citation: Semere W, Karter AJ, Lyles CR .
Care partner engagement in secure messaging between patients with diabetes and their clinicians: cohort study.
JMIR Diabetes 2024 Feb 9; 9:e49491. doi: 10.2196/49491.
Keywords: Diabetes, Patient and Family Engagement, Clinician-Patient Communication
Sleath B, Beznos B, Carpenter DM
African American patient-provider communication about glaucoma vision quality-of-life.
A study was conducted to examine African American patient-provider communication about glaucoma-related quality-of-life. Patients completed a vision quality-of-life assessment to examine patient-provider characteristics, patient demographics, and socio-demographics. The study determined that patients with worse literacy, more severe glaucoma, or depression are likely to have a lower vision quality-of-life.
AHRQ-funded; HS025370.
Citation: Sleath B, Beznos B, Carpenter DM .
African American patient-provider communication about glaucoma vision quality-of-life.
Eye 2024 Feb; 38(2):343-48. doi: 10.1038/s41433-023-02693-8..
Keywords: Eye Disease and Health, Racial and Ethnic Minorities, Clinician-Patient Communication, Communication, Quality of Life
Beznos B, Sayner R, Carpenter DM
Do African American patients with glaucoma ask their eye providers the questions they have?
The objective of this randomized controlled trial was to test the effectiveness of a pre-visit video/glaucoma question prompt-list to increase question-asking during medical visits. Participants were adult African American patients with glaucoma and a history of non-adherence to glaucoma medications, The questions that patients checked on the question prompt list were described, and how often the same checked questions were asked during medical visits noted. The findings indicated that although patients with glaucoma had questions about glaucoma and their medications, few asked all their questions during visits. The researchers concluded that future research should focus on ways to improve question asking using a question prompt list.
AHRQ-funded; HS025370.
Citation: Beznos B, Sayner R, Carpenter DM .
Do African American patients with glaucoma ask their eye providers the questions they have?
Eye 2024 Feb; 38(2):279-83. doi: 10.1038/s41433-023-02674-x..
Keywords: Racial and Ethnic Minorities, Eye Disease and Health, Clinician-Patient Communication, Communication
Liu SK, Bourgeois F, Dong J
What's going well: a qualitative analysis of positive patient and family feedback in the context of the diagnostic process.
This paper evaluated positive patient/family feedback to generate broader perspectives on what constitutes a "good" diagnostic process (DxP). Eligible participants included patients/families living with chronic conditions with visits in three urban pediatric subspecialty clinics (site 1) and one rural adult primary care clinic (site 2) who were then invited to complete a survey between December 2020 and March 2020. The authors adapted the Healthcare Complaints Analysis Tool (HCAT) to conduct a qualitative analysis on a subset of patient/family responses with ≥20 words. A total of 7,075 surveys were completed before 18,129 visits (39 %) at site 1, and 460 surveys were completed prior to 706 (65 %) visits at site 2. Positive feedback was provided by 1,578 participants, ranging from 1-79 words. Categories of 272 comments with ≥20 words described: Relationships (60 %), Clinical Care (36 %), and Environment (4 %). In the Relationships category patients/families most commonly noted: thorough and competent attention (46 %), clear communication and listening (41 %) and emotional support and human connection (39 %). For Clinical Care, patients highlighted: timeliness (31 %), effective clinical management (30 %), and coordination of care (25 %).
AHRQ-funded; HS027367.
Citation: Liu SK, Bourgeois F, Dong J .
What's going well: a qualitative analysis of positive patient and family feedback in the context of the diagnostic process.
Diagnosis 2024 Feb 1; 11(1):63-72. doi: 10.1515/dx-2023-0075.
Keywords: Diagnostic Safety and Quality, Clinician-Patient Communication, Communication, Patient and Family Engagement
Nacht CL, Jacobson N, Shiyanbola O
Perception of physicians' notes among parents of different health literacy levels.
The study explored how parents of varying health literacy levels perceive accessing physicians' notes during pediatric hospitalization. Thematic analysis of interviews with 28 parents revealed benefits like information recall and autonomy, with challenges including receiving bad news before face-to-face communication. The study found that parents with limited literacy found notes especially helpful for understanding the care of the child while reducing worry. Simplifying medical terms could enhance note accessibility for all parents, ensuring equitable access to healthcare information.
AHRQ-funded; HS027214.
Citation: Nacht CL, Jacobson N, Shiyanbola O .
Perception of physicians' notes among parents of different health literacy levels.
Hosp Pediatr 2024 Feb; 14(2):108-15. doi: 10.1542/hpeds.2023-007240.
Keywords: Children/Adolescents, Health Literacy, Caregiving, Clinician-Patient Communication, Communication
Carroll AR, Johnson JA, Stassun JC
Health literacy-informed communication to reduce discharge medication errors in hospitalized children: a randomized clinical trial.
This study’s objective was to test a health literacy-informed communication intervention to decrease liquid medication dosing errors compared with standard counseling in hospitalized children. This parallel, randomized clinical trial was conducted from June 22, 2021, to August 20, 2022, at a tertiary care, US children's hospital. English- and Spanish-speaking caregivers of hospitalized children 6 years or younger prescribed a new, scheduled liquid medication at discharge were included in the analysis. Observed dosing errors were the main outcome measured, and secondary outcomes included caregiver-reported medication knowledge. Among 198 randomized caregivers (mean age 31.4 years; 186 women [93.9%]; 36 [18.2%] Hispanic or Latino and 158 [79.8%] White), the primary outcome was available for 151 (76.3%). The observed mean (SD) percentage dosing error was 1.0% (2.2 percentage points) among the intervention group and 3.3% (5.1 percentage points) among the standard counseling group (absolute difference, 2.3 percentage points). Twenty-four of 79 caregivers in the intervention group (30.4%) measured an incorrect dose compared with 39 of 72 (54.2%) in the standard counseling group. The intervention enhanced caregiver-reported medication knowledge compared with the standard counseling group for medication dose (71 of 76 [93.4%] vs 55 of 69 [79.7%]), duration of administration (65 of 76 [85.5%] vs 49 of 69 [71.0%], and correct reporting of 2 or more medication adverse effects (60 of 76 [78.9%] vs 13 of 69 [18.8%]).
AHRQ-funded; HS026122.
Citation: Carroll AR, Johnson JA, Stassun JC .
Health literacy-informed communication to reduce discharge medication errors in hospitalized children: a randomized clinical trial.
JAMA Netw Open 2024 Jan 2; 7(1):e2350969. doi: 10.1001/jamanetworkopen.2023.50969..
Keywords: Children/Adolescents, Health Literacy, Communication, Medication, Adverse Drug Events (ADE), Adverse Events, Medical Errors, Clinician-Patient Communication, Hospital Discharge, Medication: Safety
Sprackling CM, Kieren MQ, Nacht CL
Adolescent access to clinicians' notes: adolescent, parent, and clinician perspectives.
This study’s goal was to identify adolescent, parent, and clinician perspectives on the anticipated benefits and concerns of giving adolescents access to clinicians’ notes and strategies in response to a 2021 federal mandate. The authors conducted six focus groups with adolescents, parents, and clinicians at a children's hospital from May to October 2021. A semistructured facilitator guide captured patient perspectives of the benefits, concerns, and strategies. A total of 38 stakeholders (17 adolescents, 10 parents, and 11 clinicians) described four benefits, three concerns, and four implementation strategies regarding adolescent note-sharing. Potential benefits captured in the focus groups included adolescents using notes to remember and reinforce the visit, gaining knowledge about their health, strengthening the adolescent-clinician relationship, and increasing agency in health care decisions. Concerns the guide captured included notes leading to a breach in confidentiality, causing negative emotions, and becoming less useful for clinicians. Strategies to address these concerns included making note-sharing more secure, optimizing note layout and content, setting clear expectations, and having a portion of the note for clinician use only.
AHRQ-funded; HS027214; HS027894.
Citation: Sprackling CM, Kieren MQ, Nacht CL .
Adolescent access to clinicians' notes: adolescent, parent, and clinician perspectives.
J Adolesc Health 2024 Jan; 74(1):155-60. doi: 10.1016/j.jadohealth.2023.08.008..
Keywords: Children/Adolescents, Clinician-Patient Communication, Patient and Family Engagement
Abraham J, Kannampallil TG, Patel VL
Impact of structured rounding tools on time allocation during multidisciplinary rounds: an observational study.
The aim of this study was to investigate whether disproportionate time allocation effects during multidisciplinary rounds (MDRs) persist with the use of structured rounding tools. It concluded that the use of structured rounding tools potentially mitigates disproportionate time allocation and communication breakdowns during rounds with the more structured system-based Handoff Intervention Tool (HAND-IT), almost completely eliminating such effects.
AHRQ-funded; HS017586.
Citation: Abraham J, Kannampallil TG, Patel VL .
Impact of structured rounding tools on time allocation during multidisciplinary rounds: an observational study.
JMIR Hum Factors 2016 Dec 09;3(2):e29. doi: 10.2196/humanfactors.6642.
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Keywords: Tools & Toolkits, Clinician-Patient Communication, Teams, Health Information Technology (HIT), Care Coordination
Gordon HS, Street RL
How physicians, patients, and observers compare on the use of qualitative and quantitative measures of physician-patient communication.
The purpose of this study was to compare several different measures of physician-patient communication. Communication was measured with rating scales completed by patients and physicians and by two groups of external observers who used rating scales or coded the frequency of communication behaviors. The findings highlight the potential for using observers' ratings as an alternate measure of communication to more labor intensive frequency measures.
AHRQ-funded; HS010876.
Citation: Gordon HS, Street RL .
How physicians, patients, and observers compare on the use of qualitative and quantitative measures of physician-patient communication.
Eval Health Prof 2016 Dec;39(4):496-511. doi: 10.1177/0163278715625737.
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Keywords: Communication, Shared Decision Making, Patient and Family Engagement, Clinician-Patient Communication
Gallagher TH, Etchegaray JM, Bergstedt B
Improving communication and resolution following adverse events using a patient-created simulation exercise.
The HealthPact Patient and Family Advisory Council (PFAC) created and led a five-stage simulation exercise to help stakeholders understand what patients experience following an adverse event. Take-homes from these exercises included the fact that the response to adverse events can be complex, siloed, and uncoordinated. Participating in this simulation exercise led stakeholders and patient advocates to express interest in continued collaboration.
AHRQ-funded; HS019531.
Citation: Gallagher TH, Etchegaray JM, Bergstedt B .
Improving communication and resolution following adverse events using a patient-created simulation exercise.
Health Serv Res 2016 Dec;51 Suppl 3:2537-49. doi: 10.1111/1475-6773.12601.
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Keywords: Adverse Events, Clinician-Patient Communication, Medical Errors, Medical Liability, Patient-Centered Healthcare, Patient Safety
Sulzer SH, Muenchow E, Potvin A
Improving patient-centered communication of the borderline personality disorder diagnosis.
This study aimed to understand how clinicians communicate the diagnosis of borderline personality disorder (BPD) with patients, and compare these practices with patient communication preferences. It found that the majority of clinicians sampled did not actively share the BPD diagnosis with their patients, while the majority of patients wanted to be told that they had the disorder, as well as have their providers discuss the stigma they would face.
AHRQ-funded; HS000032.
Citation: Sulzer SH, Muenchow E, Potvin A .
Improving patient-centered communication of the borderline personality disorder diagnosis.
J Ment Health 2016;25(1):5-9. doi: 10.3109/09638237.2015.1022253.
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Keywords: Communication, Diagnostic Safety and Quality, Behavioral Health, Clinician-Patient Communication, Social Stigma
Traino HM, Siminoff LA
Keep it going: maintaining health conversations using relational and instrumental approaches.
The researchers examined how elements of relational and instrumental communication occurring within the first five minutes of the request impacted the length of the discussion. Sixteen U.S. tissue banking organizations and their staff making telephone requests for donation to families of tissue-donation eligible patients agreed to participate in the research. The researchers concluded that aspects of both relational and instrumental communication were associated with discussion length.
AHRQ-funded; HS013152.
Citation: Traino HM, Siminoff LA .
Keep it going: maintaining health conversations using relational and instrumental approaches.
Health Commun 2016;31(3):308-19. doi: 10.1080/10410236.2014.950020.
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Keywords: Communication, Patient and Family Engagement, Clinician-Patient Communication
Lee JL, Beach MC, Berger ZD
A qualitative exploration of favorite patients in primary care.
This study ascertained whether physicians have favorite patients, their experiences with such patients, and how such relationships may influence patients and physicians. It found that most participants (22/25) reported having favorite patients. For many physicians, favorite patients were not necessarily the most compliant patients, or those most similar to them. Instead, favorite patients were often very sick patients and/or those who have known their physicians for a long time.
AHRQ-funded; HS000029.
Citation: Lee JL, Beach MC, Berger ZD .
A qualitative exploration of favorite patients in primary care.
Patient Educ Couns 2016 Nov;99(11):1888-93. doi: 10.1016/j.pec.2016.06.023.
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Keywords: Patient Experience, Patient and Family Engagement, Primary Care, Clinician-Patient Communication
Toomey SL, Elliott MN, Schwebel DC
Relationship between adolescent report of patient-centered care and of quality of primary care.
This study investigated whether adolescent self-report of patient-centered care (PCC) varied by patient characteristics and whether receipt of PCC is associated with measures of adolescent primary care quality. It found that adolescent-reported PCC positively correlates with measures of high-quality adolescent primary care. The study provides support for using adolescent-report of PCC as a measure of adolescent primary care quality.
AHRQ-funded; HS020513.
Citation: Toomey SL, Elliott MN, Schwebel DC .
Relationship between adolescent report of patient-centered care and of quality of primary care.
Acad Pediatr 2016 Nov - Dec;16(8):770-76. doi: 10.1016/j.acap.2016.01.006.
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Keywords: Children/Adolescents, Primary Care, Clinician-Patient Communication, Quality of Care, Access to Care
Prochaska MT, Press VG, Meltzer DO
Patient perceptions of wearable face-mounted computing technology and the effect on the doctor-patient relationship.
The authors aimed to determine patients' perception of and their privacy concerns with Google Glass. They found that the majority, 64% of respondents, appeared open to and would want their doctor to use face-mounted wearable computers such as Google Glass, even when they were unfamiliar with this technology. Although some patients expressed concerns about privacy, the authors found that patients were much less concerned about wearable technologies affecting the trust they have in their physician.
AHRQ-funded; HS023007.
Citation: Prochaska MT, Press VG, Meltzer DO .
Patient perceptions of wearable face-mounted computing technology and the effect on the doctor-patient relationship.
Appl Clin Inform 2016 Oct 12;7(4):946-53. doi: 10.4338/aci-2016-06-le-0094.
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Keywords: Health Information Technology (HIT), Hospitalization, Patient-Centered Healthcare, Patient Experience, Clinician-Patient Communication
Lyles CR, Allen JY, Poole D
"I want to keep the personal relationship with my doctor": Understanding barriers to portal use among African Americans and Latinos.
The investigators sought to understand specific barriers to portal use among African American and Latino patients at Kaiser Permanente, which has had a portal in place for over a decade. Their findings suggest that uniform adoption of portal use across diverse patient groups requires more usable, more personalized websites, which may be particularly important for reducing health care disparities.
AHRQ-funded; HS022408.
Citation: Lyles CR, Allen JY, Poole D .
"I want to keep the personal relationship with my doctor": Understanding barriers to portal use among African Americans and Latinos.
J Med Internet Res 2016 Oct 3;18(10):e263. doi: 10.2196/jmir.5910.
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Keywords: Disparities, Electronic Health Records (EHRs), Clinician-Patient Communication, Racial and Ethnic Minorities, Web-Based
Kantor R, Thyssen JP, Paller AS
Atopic dermatitis, atopic eczema, or eczema? A systematic review, meta-analysis, and recommendation for uniform use of 'atopic dermatitis'.
The authors sought to determine the most commonly-used terms for atopic dermatitis. They found that atopic dermatitis was the most commonly-used term in studies across almost all publication types, languages, and journals and appears to be increasing in popularity. They concluded by suggesting the use of the term atopic dermatitis in publications, healthcare clinician training, and patient education.
AHRQ-funded; HS023011.
Citation: Kantor R, Thyssen JP, Paller AS .
Atopic dermatitis, atopic eczema, or eczema? A systematic review, meta-analysis, and recommendation for uniform use of 'atopic dermatitis'.
Allergy 2016 Oct;71(10):1480-5. doi: 10.1111/all.12982.
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Keywords: Education: Patient and Caregiver, Diagnostic Safety and Quality, Patient-Centered Healthcare, Clinician-Patient Communication, Skin Conditions
Krouss M, Croft L, Morgan DJ
Physician understanding and ability to communicate harms and benefits of common medical treatments.
The researchers evaluated physician understanding of harms and benefits of common tests and therapies. They found that most clinicians overestimate harms and benefits for most treatments. Likewise, most of the clinicians in our study reported rarely or never using statistical terms to explain treatment options to patients. However, they were interested in resources to improve understanding of treatment effect size.
AHRQ-funded; HS018111.
Citation: Krouss M, Croft L, Morgan DJ .
Physician understanding and ability to communicate harms and benefits of common medical treatments.
JAMA Intern Med 2016 Oct;176(10):1565-67. doi: 10.1001/jamainternmed.2016.5027.
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Keywords: Adverse Events, Communication, Education: Patient and Caregiver, Patient Safety, Clinician-Patient Communication
Tan JY, Xu LJ, Lopez FY
Shared decision making among clinicians and Asian American and Pacific Islander sexual and gender minorities: an intersectional approach to address a critical care gap.
The authors illustrated how issues at the intersection of Asian American and Pacific Islander (AAPI) and sexual and gender minorities (SGM) identities affect shared decision making processes and health outcomes. They discussed experiences of AAPI SGM that are affected by AAPI heterogeneity, SGM stigma, multiple minority group identities, and sources of discrimination.
AHRQ-funded; HS022433.
Citation: Tan JY, Xu LJ, Lopez FY .
Shared decision making among clinicians and Asian American and Pacific Islander sexual and gender minorities: an intersectional approach to address a critical care gap.
LGBT Health 2016 Oct;3(5):327-34. doi: 10.1089/lgbt.2015.0143.
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Keywords: Shared Decision Making, Disparities, Racial and Ethnic Minorities, Clinician-Patient Communication, Social Stigma
Shay LA, Street RL, Jr., Baldwin AS
Characterizing safety-net providers' HPV vaccine recommendations to undecided parents: a pilot study.
The researchers developed a tool to describe strength and content of provider HPV vaccination recommendations. The tool showed how providers undercut their recommendations through qualifications or support them with a rationale. The authors recommended that providers would benefit from communication skills training on how to make explicit recommendations with an evidence-based rationale.
AHRQ-funded; HS022418.
Citation: Shay LA, Street RL, Jr., Baldwin AS .
Characterizing safety-net providers' HPV vaccine recommendations to undecided parents: a pilot study.
Patient Educ Couns 2016 Sep;99(9):1452-60. doi: 10.1016/j.pec.2016.06.027.
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Keywords: Practice Patterns, Vaccination, Infectious Diseases, Sexual Health, Clinician-Patient Communication, Guidelines, Evidence-Based Practice, Communication
Gulbrandsen P, Clayman ML, Beach MC
Shared decision-making as an existential journey: aiming for restored autonomous capacity.
The researchers described the different ways in which illness represents an existential problem, and its implications for shared decision-making. They found that the fundamental uncertainty, state of vulnerability, and lack of power of the ill patient, imbue shared decision-making with a deeper existential significance and call for greater attention to the emotional and relational dimensions of care. They propose that the aim of shared decision-making should be restoration of the patient's autonomous capacity.
AHRQ-funded; HS022932.
Citation: Gulbrandsen P, Clayman ML, Beach MC .
Shared decision-making as an existential journey: aiming for restored autonomous capacity.
Patient Educ Couns 2016 Sep;99(9):1505-10. doi: 10.1016/j.pec.2016.07.014.
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Keywords: Communication, Shared Decision Making, Patient-Centered Healthcare, Patient and Family Engagement, Clinician-Patient Communication
Mabachi NM, Cifuentes M, Barnard J
AHRQ Author: Brach C
Demonstration of the Health Literacy Universal Precautions Toolkit: lessons for quality improvement.
AHRQ’s Health Literacy Universal Precautions Toolkit was developed to help primary care practices assess and make changes to improve communication with and support for patients. Twelve diverse primary care practices implemented assigned tools over a 6-month period. Qualitative results revealed challenges practices experienced during implementation, including competing demands, bureaucratic hurdles, technological challenges, limited quality improvement experience, and limited leadership support.
AHRQ-authored.
Citation: Mabachi NM, Cifuentes M, Barnard J .
Demonstration of the Health Literacy Universal Precautions Toolkit: lessons for quality improvement.
J Ambul Care Manage 2016 Jul-Sep;39(3):199-208. doi: 10.1097/jac.0000000000000102..
Keywords: Health Literacy, Quality Improvement, Tools & Toolkits, Primary Care, Clinician-Patient Communication
Cato KD, Bockting W, Larson E
Did I tell you that? Ethical issues related to using computational methods to discover non-disclosed patient characteristics.
Using the Belmont Report's principles of respect for persons, beneficence, and justice as a framework, the authors examined the ethical issues posed by electronic phenotyping. Ethical issues identified include the ability of the patient to consent for the use of their information, the ability to suppress pediatric information, and ensuring that the potential benefits justify the risks of harm to patients.
AHRQ-funded; HS022961.
Citation: Cato KD, Bockting W, Larson E .
Did I tell you that? Ethical issues related to using computational methods to discover non-disclosed patient characteristics.
J Empir Res Hum Res Ethics 2016 Jul;11(3):214-9. doi: 10.1177/1556264616661611.
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Keywords: Clinician-Patient Communication, Data, Electronic Health Records (EHRs), Health Information Technology (HIT), Patient-Centered Outcomes Research, Registries, Research Methodologies