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- Behavioral Health (2)
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- Medical Expenditure Panel Survey (MEPS) (1)
- Neurological Disorders (1)
- Outcomes (2)
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- Patient-Centered Healthcare (11)
- (-) Patient-Centered Outcomes Research (27)
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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 27 Research Studies DisplayedNijhawan AE, Bhattatiry M, Chansard M
HIV care cascade before and after hospitalization: impact of a multidisciplinary inpatient team in the US South.
Hospitalization represents an opportunity to re-engage out-of-care individuals, improve HIV outcomes, and reduce health disparities. The authors reviewed electronic health records of HIV-positive individuals hospitalized at an urban, public hospital between September 2013 and December 2015. They found that hospitalized patients with HIV had low rates of engagement in care, retention in care, and virologic suppression, though all three outcomes improved after hospitalization. A multidisciplinary transitions team improved care engagement and virologic suppression in those who received the intervention.
AHRQ-funded; HS022418.
Citation: Nijhawan AE, Bhattatiry M, Chansard M .
HIV care cascade before and after hospitalization: impact of a multidisciplinary inpatient team in the US South.
AIDS Care 2020 Nov;32(11):1343-52. doi: 10.1080/09540121.2019.1698704.
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Keywords: Human Immunodeficiency Virus (HIV), Transitions of Care, Inpatient Care, Teams, Hospitalization, Patient and Family Engagement, Patient-Centered Healthcare, Patient-Centered Outcomes Research, Outcomes, Evidence-Based Practice
Byham-Gray LD, Peters EN, Rothpletz-Puglia P
Patient-centered model for protein-energy wasting: stakeholder deliberative panels.
Integrating the patient's voice into research prioritization is essential for solving problems that patients care the most about in terms of health, symptom management, and survival. In this study, the investigators used deliberative processes for adapting the existing model of protein-energy wasting (PEW) to one that included stakeholder priorities, addressing gaps from the initial concept.
AHRQ-funded; HS023434.
Citation: Byham-Gray LD, Peters EN, Rothpletz-Puglia P .
Patient-centered model for protein-energy wasting: stakeholder deliberative panels.
J Ren Nutr 2020 Mar;30(2):137-44. doi: 10.1053/j.jrn.2019.06.001..
Keywords: Patient-Centered Healthcare, Patient-Centered Outcomes Research, Evidence-Based Practice, Patient and Family Engagement, Research Methodologies
Austin E, LeRouge C, Hartzler AL
Capturing the patient voice: implementing patient-reported outcomes across the health system.
This study reported learnings and practice insights from University of Wisconsin’s (UW’s) efforts to implement patient-reported outcomes (PROs) in a healthcare system. The researchers engaged with UW Medicine clinical and administrative stakeholders experienced with PRO implementation. There were 14 total implementations conducted, and nearly half captured shared clinical domains. They developed three vignettes that illustrate how users interact with PRO, characterize common ways PRO implementations support clinical care across the health system, and elucidate opportunities to enhance efficient PRO implementations.
AHRQ-funded; HS023785.
Citation: Austin E, LeRouge C, Hartzler AL .
Capturing the patient voice: implementing patient-reported outcomes across the health system.
Qual Life Res 2020 Feb;29(2):347-55. doi: 10.1007/s11136-019-02320-8..
Keywords: Patient-Centered Outcomes Research, Patient and Family Engagement, Healthcare Delivery
Dukhanin V, Feeser S, Berkowitz SA
Who represents me? A patient-derived model of patient engagement via patient and family advisory councils (PFACs).
This study examined what expectations would be from patients who are not patient and family advisory council (PFAC) members of PFACs. Patients and caregivers from the Johns Hopkins Medical Alliance for Patients, LLC were recruited in 2014. This Medicare accountable care organization has an established PFAC, the Beneficiary Advisory Council. Five focus groups with 42 patients and caregivers participated. Most participants were not aware of PFACs and wanted to know more about representation, what they could do and expected that patients could communicate with PFACs if desired.
AHRQ-funded; HS023684.
Citation: Dukhanin V, Feeser S, Berkowitz SA .
Who represents me? A patient-derived model of patient engagement via patient and family advisory councils (PFACs).
Health Expect 2020 Feb;23(1):148-58. doi: 10.1111/hex.12983..
Keywords: Patient and Family Engagement, Patient-Centered Outcomes Research, Patient-Centered Healthcare, Healthcare Delivery, Health Systems
Anderson AC, Akre E, Chen J
Exploring national trends of patient- and family-centered care among US children.
This study examined national trends in the receipt of high-quality patient-physician communication and patient empowerment through behavioral health counseling among children in the United States. They used Medical Expenditure Panel Survey (MEPS) data from 2010 to 2014. Two measures of patient- and family-centered care (PFCC) were analyzed: 1) a composite measure of high-quality patient-physician communication, and 2) patient empowerment through behavioral health counseling about healthy eating and exercise. There were high rates of receiving high-quality physician-patient communication (92-93%) as opposed to behavioral counseling about healthy eating (53-60%) and exercise (37-42%). There was a higher rate of high-quality physician-patient communication in 2014 than in 2010, but there was not a similar increase in receiving behavioral health counseling. Lower odds of receiving behavioral health counseling were found for parents with low income and low educational attainment as well as lack of insurance.
AHRQ-funded; HS022135.
Citation: Anderson AC, Akre E, Chen J .
Exploring national trends of patient- and family-centered care among US children.
J Child Health Care 2019 Jun;23(2):200-12. doi: 10.1177/1367493518786015..
Keywords: Medical Expenditure Panel Survey (MEPS), Children/Adolescents, Clinician-Patient Communication, Communication, Patient and Family Engagement, Patient-Centered Outcomes Research, Family Health and History, Lifestyle Changes
Kukulka K, Washington KT, Govindarajan R
Stakeholder perspectives on the biopsychosocial and spiritual realities of living with ALS: implications for palliative care teams.
The purpose of this study was to generate a rich description of the realities of living with amyotrophic lateral sclerosis (ALS), equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers. Study findings illustrated the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The investigators concluded that the complex biopsychosocial needs experienced by patients and family caregivers suggested numerous opportunities for meaningful palliative care involvement.
AHRQ-funded; HS022140.
Citation: Kukulka K, Washington KT, Govindarajan R .
Stakeholder perspectives on the biopsychosocial and spiritual realities of living with ALS: implications for palliative care teams.
Am J Hosp Palliat Care 2019 Oct;36(10):851-57. doi: 10.1177/1049909119834493..
Keywords: Palliative Care, Patient-Centered Outcomes Research, Neurological Disorders, Patient-Centered Healthcare, Patient and Family Engagement, Caregiving
Ivlev I, Vander Ley KJ, Wiedrick J
Training patients to review scientific reports for the Patient-Centered Outcomes Research Institute: an observational study.
This observational study aimed to evaluate the effect of new training for patient peer reviewers of scientific reports for the Patient-Centered Outcomes Research Institute (PCORI). A new online training in peer review was used to help change reviewers’ knowledge and skills and change self-efficacy and attitudes. Reviewers improved their answers to the knowledge questions. Median numbers of answers improved after the training, particularly in questions targeting the specifics of PCORI peer review. It modestly increased reviewers’ confidence in completing a high-quality peer review. Their excitement about providing a review slightly increased. All reviewers were satisfied with the training.
AHRQ-funded; HS026370.
Citation: Ivlev I, Vander Ley KJ, Wiedrick J .
Training patients to review scientific reports for the Patient-Centered Outcomes Research Institute: an observational study.
BMJ Open 2019 Sep;9(9):e028732. doi: 10.1136/bmjopen-2018-028732..
Keywords: Patient-Centered Outcomes Research, Evidence-Based Practice, Research Methodologies, Patient and Family Engagement, Education: Patient and Caregiver, Training
Yanez B, Bouchard LC, Cella D
Patient-centered engagement and symptom/toxicity monitoring in the new era of tumor next-generation sequencing and immunotherapy: the OncoTool and OncoPRO platforms.
This paper describes the development of the OncoTool and OncoPRO platforms to help patients with late-stage cancer (stages III-IV) and their providers in providing patient-centered education and remote and routine monitoring of symptoms and toxicities after tumor next-generation sequencing testing and treatment. The OncoTool is a web-based educational resource tailored for people with advanced cancer. It aims to provide patients with easy-to-understand treatment options and associated toxicities as well as evidence-based strategies for managing symptoms and improving stress management. It is fully integrated with OncoPRO which provides feedback on patient-reported outcomes (PROs) to clinicians. The data from the platform can be integrated with the patient’s electronic health record (HER) and can provide an alert message. These systems are currently being tested with 4 trials – 1 for OncoTool and the other 3 for OncoPRO.
AHRQ-funded; HS023011.
Citation: Yanez B, Bouchard LC, Cella D .
Patient-centered engagement and symptom/toxicity monitoring in the new era of tumor next-generation sequencing and immunotherapy: the OncoTool and OncoPRO platforms.
Cancer 2019 Jul 15;125(14):2338-44. doi: 10.1002/cncr.32030..
Keywords: Cancer, Education: Patient and Caregiver, Electronic Health Records (EHRs), Evidence-Based Practice, Health Information Technology (HIT), Patient-Centered Healthcare, Patient-Centered Outcomes Research, Patient and Family Engagement
Hall TL, Knierim KE, Nease DE
Primary care practices' implementation of patient-team partnership: findings from EvidenceNOW Southwest.
The authors reported on practice characteristics associated with greater patient-team partnership scores. Using EvidenceNOW Southwest data, they found that practices can improve efforts to partner with patients to assess social needs, gather meaningful input on practice improvement and patient experience, and offer resource connections. These findings supplement recent evidence that patient registries and evidence-based guidelines may effectively prevent and manage cardiovascular disease.
AHRQ-funded; HS023904.
Citation: Hall TL, Knierim KE, Nease DE .
Primary care practices' implementation of patient-team partnership: findings from EvidenceNOW Southwest.
J Am Board Fam Med 2019 Jul-Aug;32(4):490-504. doi: 10.3122/jabfm.2019.04.180361..
Keywords: Cardiovascular Conditions, Clinician-Patient Communication, Evidence-Based Practice, Patient-Centered Healthcare, Patient-Centered Outcomes Research, Patient and Family Engagement, Primary Care, Quality of Care, Quality Improvement
Pavlo AJ, O'Connell M, Olsen S
Missing ingredients in shared decision-making?
This article discusses the practice of shared decision making (SDM) for clinicians when making decisions in health care. This widespread practice is considered the best approach for person-centered care, but for individuals diagnosed with serious mental illness there are still many barriers to effective collaboration. The authors suggest that more emphasis needs to be placed on the doctor-patient relationship itself conducting SDM.
AHRQ-funded; HS023000.
Citation: Pavlo AJ, O'Connell M, Olsen S .
Missing ingredients in shared decision-making?
Psychiatr Q 2019 Jun;90(2):333-38. doi: 10.1007/s11126-019-9624-9..
Keywords: Chronic Conditions, Clinician-Patient Communication, Communication, Shared Decision Making, Behavioral Health, Patient-Centered Healthcare, Patient-Centered Outcomes Research, Patient and Family Engagement
Ita AJ, Olden HA, Kippen KE
A flexible model for patient engagement: achieving quality outcomes and building a research agenda for head and neck cancer.
This article describes the work of a head and neck cancer survivors who became advisors on a multidisciplinary team of providers. The survivors provided feedback to providers on areas of improvement for clinical flow and they also have provided advice on efforts to increase public awareness. They have also been very active at cancer symposiums and other local presentations.
AHRQ-funded; HS022417.
Citation: Ita AJ, Olden HA, Kippen KE .
A flexible model for patient engagement: achieving quality outcomes and building a research agenda for head and neck cancer.
Head Neck 2019 Apr;41(4):1087-93. doi: 10.1002/hed.25584..
Keywords: Cancer, Health Services Research (HSR), Patient-Centered Outcomes Research, Patient and Family Engagement
Ivey SL, Shortell SM, Rodriguez HP
Patient engagement in ACO practices and patient-reported outcomes among adults with co-occurring chronic disease and mental health conditions.
The purpose of this study was to assess the extent to which practices with patient-centered cultures, greater shared decision-making strategies, and better coordination among team members have better patient-reported outcomes for patients with diabetes and/or cardiovascular and comorbid mental health diagnoses. The study concluded that Accountable Care Organization patients with comorbid physical and mental health diagnoses report better physical functioning when practices have patient-centered cultures.
AHRQ-funded; HS024075.
Citation: Ivey SL, Shortell SM, Rodriguez HP .
Patient engagement in ACO practices and patient-reported outcomes among adults with co-occurring chronic disease and mental health conditions.
Med Care 2018 Jul;56(7):551-56. doi: 10.1097/mlr.0000000000000927..
Keywords: Chronic Conditions, Behavioral Health, Patient and Family Engagement, Patient-Centered Healthcare, Patient-Centered Outcomes Research
Armstrong MJ, Mullins CD, Gronseth GS
Impact of patient involvement on clinical practice guideline development: a parallel group study.
The aim of this study was to investigate the effect of patient and public involvement (PPI) on guideline question formation and validate a conceptual model of patient and public contributions to guidelines. The qualitative analysis of the discussions occurring during guideline question development demonstrated key differences in group conduct and validated the proposed conceptual model of patient and public contributions to guidelines.
AHRQ-funded; HS024159; HS022135.
Citation: Armstrong MJ, Mullins CD, Gronseth GS .
Impact of patient involvement on clinical practice guideline development: a parallel group study.
Implement Sci 2018 Apr 16;13(1):55. doi: 10.1186/s13012-018-0745-6.
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Keywords: Evidence-Based Practice, Guidelines, Patient and Family Engagement, Patient-Centered Outcomes Research, Research Methodologies
Kamal AH, Kirkland KB, Meier DE
A person-centered, registry-based learning health system for palliative care: a path to coproducing better outcomes, experience, value, and science.
In this paper, the authors discuss measurement of the impact of palliative care, which is critical for determining what works for which patients in what settings, to learn, improve care, and ensure access to high value care for people with serious illness. The authors described an approach to codesigning and implementing a palliative care registry that functions as a learning health system, by combining patient and family inputs and clinical data to support person-centered care, quality improvement, accountability, transparency, and scientific research.
AHRQ-funded; HS023681.
Citation: Kamal AH, Kirkland KB, Meier DE .
A person-centered, registry-based learning health system for palliative care: a path to coproducing better outcomes, experience, value, and science.
J Palliat Med 2018 Mar;21(S2):S61-s67. doi: 10.1089/jpm.2017.0354..
Keywords: Palliative Care, Patient-Centered Healthcare, Patient-Centered Outcomes Research, Outcomes, Learning Health Systems, Registries, Patient and Family Engagement
Shortell SM, Poon BY, Ramsay PP
A multilevel analysis of patient engagement and patient-reported outcomes in primary care practices of accountable care organizations.
For adult primary care practices seeing patients with diabetes and/or cardiovascular disease, researchers examined the relationship between selected practice characteristics, patient engagement, and patient-reported outcomes of care. They found that having a patient-centered culture was positively associated with fewer depression symptoms and better physical function scores. Patient activation was positively associated with fewer depression symptoms.
AHRQ-funded; HS024075.
Citation: Shortell SM, Poon BY, Ramsay PP .
A multilevel analysis of patient engagement and patient-reported outcomes in primary care practices of accountable care organizations.
J Gen Intern Med 2017 Jun;32(6):640-47. doi: 10.1007/s11606-016-3980-z.
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Keywords: Patient and Family Engagement, Patient-Centered Outcomes Research, Primary Care, Chronic Conditions, Diabetes, Cardiovascular Conditions
Ray KN, Miller E
Strengthening stakeholder-engaged research and research on stakeholder engagement.
The proposed exploratory framework highlights contexts and processes to be addressed in planning stakeholder engagement, and potential immediate, intermediate and long-term outcomes that warrant evaluation. The authors use this framework to illustrate both the minimum information needed for reporting stakeholder-engaged research and the comprehensive detail needed for reporting research on stakeholder engagement.
AHRQ-funded; HS022989.
Citation: Ray KN, Miller E .
Strengthening stakeholder-engaged research and research on stakeholder engagement.
J Comp Eff Res 2017 Jun;6(4):375-89. doi: 10.2217/cer-2016-0096.
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Keywords: Patient and Family Engagement, Patient-Centered Outcomes Research, Research Methodologies
Spatz ES, Krumholz HM, Moulton BW
Prime time for shared decision making.
To guide the implementation of high-quality and achievable shared decision making, policy makers and health systems may consider the following key steps: 1) clearly define shared decision making; 2) certify decision aids and provide incentives for their evaluation and maintenance; 3) promote competency in shared decision making; 4) develop measures of shared decisionmaking; and 5) foster a culture of shared decisionmaking through easy additions to work flow and positive incentives.
AHRQ-funded; HS023000.
Citation: Spatz ES, Krumholz HM, Moulton BW .
Prime time for shared decision making.
JAMA 2017 Apr;317(13):1309-10. doi: 10.1001/jama.2017.0616.
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Keywords: Shared Decision Making, Clinician-Patient Communication, Patient and Family Engagement, Patient-Centered Outcomes Research
Armstrong MJ, Rueda JD, Gronseth GS
Framework for enhancing clinical practice guidelines through continuous patient engagement.
The authors propose a ten-step framework outlining steps and options for patient engagement in guideline development with the goal of highlighting steps for patient engagement and methods by which this can be achieved. This framework can serve as a resource for guideline developers desiring to increase patient engagement and reference for researchers investigating engagement methodology at different steps of the clinical practice guideline lifecycle.
AHRQ-funded; HS024159.
Citation: Armstrong MJ, Rueda JD, Gronseth GS .
Framework for enhancing clinical practice guidelines through continuous patient engagement.
Health Expect 2017 Feb;20(1):3-10. doi: 10.1111/hex.12467.
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Keywords: Evidence-Based Practice, Guidelines, Patient and Family Engagement, Patient-Centered Outcomes Research, Quality Improvement
Makam AN, Nguyen OK
An evidence-based medicine approach to antihyperglycemic therapy in diabetes mellitus to overcome overtreatment.
This article discusses the importance of (1) using absolute rather than relative estimates of benefits to inform treatment decisions; (2) considering the time horizon to benefit of treatments; (3) balancing potential harms and benefits; and (4) using shared decision making by physicians to incorporate the patient's values and preferences into treatment decisions.
AHRQ-funded; HS022418.
Citation: Makam AN, Nguyen OK .
An evidence-based medicine approach to antihyperglycemic therapy in diabetes mellitus to overcome overtreatment.
Circulation 2017 Jan 10;135(2):180-95. doi: 10.1161/circulationaha.116.022622.
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Keywords: Shared Decision Making, Diabetes, Evidence-Based Practice, Patient and Family Engagement, Patient-Centered Outcomes Research
Vandigo J, Oloyede E, Aly A
Continuous patient engagement in cardiovascular disease clinical comparative effectiveness research.
The Patient-Centered Outcomes Research Institute has created an Engagement Rubric to guide meaningful engagement in the research process. A 10-step systematic framework to enhance patient engagement throughout the comparative effectiveness research process also has been proposed. This special report identifies the relationship between these two approaches to patient engagement and describes examples of how patients could be engaged in a hypothetical CVD study.
AHRQ-funded; HS022135.
Citation: Vandigo J, Oloyede E, Aly A .
Continuous patient engagement in cardiovascular disease clinical comparative effectiveness research.
Expert Rev Pharmacoecon Outcomes Res 2016;16(2):193-8. doi: 10.1586/14737167.2016.1163222.
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Keywords: Cardiovascular Conditions, Comparative Effectiveness, Patient-Centered Outcomes Research, Patient and Family Engagement
Tyler Ellis C, Charlton ME, Stitzenberg KB
Patient-reported roles, preferences, and expectations regarding treatment of stage i rectal cancer in the cancer care outcomes research and surveillance consortium.
The researchers identified patient roles, preferences, and expectations as they relate to treatment decision making for patients with stage I rectal cancer. They found that, in this study of 154 adults with newly-diagnosed and surgically treated stage 1 rectal cancer, the preferred decision-making role for patients did not match the actual decision-making process. They recommended that future efforts focus on bridging the gap between the decision-making process and patient preferences regarding various treatment approaches.
AHRQ-funded; HS000032.
Citation: Tyler Ellis C, Charlton ME, Stitzenberg KB .
Patient-reported roles, preferences, and expectations regarding treatment of stage i rectal cancer in the cancer care outcomes research and surveillance consortium.
Dis Colon Rectum 2016 Oct;59(10):907-15. doi: 10.1097/dcr.0000000000000662.
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Keywords: Cancer: Colorectal Cancer, Shared Decision Making, Patient-Centered Outcomes Research, Patient Experience, Patient and Family Engagement
Kostick KM, Minard CG, Wilhelms LA
Development and validation of a patient-centered knowledge scale for left ventricular assist device placement.
The authors presented a comprehensive and valid methodology for developing a clinically informed and patient-centered measure of knowledge about left ventricular assist device (LVAD) therapy to facilitate discussion and measure candidate understanding of treatment options. They concluded that the LVAD knowledge scale may be useful in clinical settings to identify gaps in knowledge among patient candidates considering LVAD treatment; to better tailor education and discussion with patients and their caregivers; and to enhance informed decision-making before treatment decisions are made.
AHRQ-funded; HS024849.
Citation: Kostick KM, Minard CG, Wilhelms LA .
Development and validation of a patient-centered knowledge scale for left ventricular assist device placement.
J Heart Lung Transplant 2016 Jun;35(6):768-76. doi: 10.1016/j.healun.2016.01.015.
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Keywords: Shared Decision Making, Heart Disease and Health, Medical Devices, Patient and Family Engagement, Patient-Centered Outcomes Research
Mishra SR, Haldar S, Pollack AH
"Not just a receiver": understanding patient behavior in the hospital environment.
Through interviews with hospitalized patients and their caregivers, the authors identified ways that patients and caregivers actively participate in their care. They described the different roles patients and caregivers assume in interacting with their hospital care team and then discuss how systems designed to support patient engagement in the hospital setting can promote active participation and help patients achieve better outcomes.
AHRQ-funded; HS022894.
Citation: Mishra SR, Haldar S, Pollack AH .
"Not just a receiver": understanding patient behavior in the hospital environment.
Proc SIGCHI Conf Hum Factor Comput Syst 2016 May 7;2016:3103-14. doi: 10.1145/2858036.2858167.
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Keywords: Health Information Technology (HIT), Hospitals, Patient and Family Engagement, Patient-Centered Outcomes Research
Lavallee DC, Chenok KE, Love RM
Incorporating patient-reported outcomes into health care to engage patients and enhance care.
The authors examine the opportunities for using patient-reported outcomes to enhance care delivery and outcomes as health care information needs and technology platforms change. They highlight emerging practices in which patient-reported outcomes provide value to patients and clinicians and improve care delivery. Finally, they examine present and future challenges to maximizing the use of patient-reported outcomes in the clinic.
AHRQ-funded; HS022789.
Citation: Lavallee DC, Chenok KE, Love RM .
Incorporating patient-reported outcomes into health care to engage patients and enhance care.
Health Aff 2016 Apr;35(4):575-82. doi: 10.1377/hlthaff.2015.1362.
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Keywords: Healthcare Delivery, Shared Decision Making, Patient-Centered Outcomes Research, Patient and Family Engagement, Quality Improvement
Schmittdiel JA, Desai J, Schroeder EB
Methods for engaging stakeholders in comparative effectiveness research: a patient-centered approach to improving diabetes care.
This article presents ways to engage stakeholders in comparative effectiveness research, including patient community surveys, stakeholder meetings with substantial patient representation, and patient stakeholder deciding votes in selecting pilot research topics. Researchers and health care leaders should continue to develop best-practices and strategies for increasing patient involvement in comparative effectiveness and delivery science research.
AHRQ-funded; HS022963; HS019859.
Citation: Schmittdiel JA, Desai J, Schroeder EB .
Methods for engaging stakeholders in comparative effectiveness research: a patient-centered approach to improving diabetes care.
Healthc (Amst) 2015 Jun;3(2):80-8. doi: 10.1016/j.hjdsi.2015.02.005.
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Keywords: Comparative Effectiveness, Diabetes, Patient-Centered Healthcare, Patient-Centered Outcomes Research, Patient and Family Engagement