Patient Participation

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  Subject Areas on Research

  • A Mixed Methods Approach to Understanding Antiretroviral Treatment Preferences: What Do Patients Really Want? 
  • A Multilevel Approach to Stakeholder Engagement in the Formulation of a Clinical Data Research Network. 
  • A Peer-led Diabetes Education Program in a Homeless Community to Improve Diabetes Knowledge and Empowerment. 
  • A System-Level Approach to Overweight and Obesity in the Veterans Health Administration. 
  • A Systematic Review of Race and Ethnicity in Hepatitis C Clinical Trial Enrollment. 
  • A matter of perspective: choosing for others differs from choosing for yourself in making treatment decisions. 
  • A randomized controlled trial comparing quantitative informed consent formats. 
  • A stakeholder-driven approach to improve the informed consent process for palliative chemotherapy. 
  • A typology of preferences for participation in healthcare decision making. 
  • A universal decision support system. Addressing the decision-making needs of patients, families, and clinicians in the setting of critical illness. 
  • Adherence, shared decision-making and patient autonomy. 
  • African-American crack abusers and drug treatment initiation: barriers and effects of a pretreatment intervention. 
  • An approach to conducting epidemiologic research within cooperative clinical trials groups. 
  • An exploration of relative health stock in advanced cancer patients. 
  • Anesthesia and analgesia-related preferences and outcomes of women who have birth plans. 
  • Are patients willing to participate in medical education? 
  • Are patients with longer emergency department wait times less likely to consent to research? 
  • Assessing quality of life and preferences in the seriously ill using utility theory. 
  • Assessing the Financial Value of Patient Engagement: A Quantitative Approach from CTTI's Patient Groups and Clinical Trials Project. 
  • Attitudes of patients with metastatic breast cancer toward research biopsies. 
  • Attitudes toward participation in a pregnancy and child cohort study. 
  • Autonomy: What's Shared Decision Making Have to Do With It? 
  • Barriers to clinical trial participation by older women with breast cancer. 
  • Barriers to the participation of African-American patients with cancer in clinical trials: a pilot study. 
  • Behavioral sciences in clinical practice. 
  • Benefits of participation in diabetes group visits after trial completion. 
  • Beyond costs and benefits: understanding how patients make health care decisions. 
  • Bladder diary measurements in asymptomatic females: functional bladder capacity, frequency, and 24-hr volume. 
  • Breast reconstruction following mastectomy. 
  • Capsule Commentary on Shortell et al., A Multilevel Analysis of Patient Engagement and Patient-Reported Outcomes in Primary Care Practices of Accountable Care Organizations. 
  • Caring for patients with chronic heart failure: The trajectory model. 
  • Challenges and strategies for implementing genomic services in diverse settings: experiences from the Implementing GeNomics In pracTicE (IGNITE) network. 
  • Challenges in measuring a new construct: perception of voluntariness for research and treatment decision making. 
  • Challenges to accrual predictions to phase III cancer clinical trials: a survey of study chairs and lead statisticians of 248 NCI-sponsored trials. 
  • Characteristics of nonresponders in a community survey of the elderly. 
  • Choices of seriously ill patients about cardiopulmonary resuscitation: correlates and outcomes. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. 
  • Choosing wisely: the American Society for Radiation Oncology's top 5 list. 
  • Clarification of Clinical Trial Registration and Reported Study Outcomes. 
  • Clinical predictors of larynx preservation after multiagent concurrent chemoradiotherapy. 
  • Clinical trial participation after myocardial infarction in a national cardiovascular data registry. 
  • Clinical trials and medical care: defining the therapeutic misconception. 
  • Communication practices in physician decision-making for an unstable critically ill patient with end-stage cancer. 
  • Community-based nursing: continence care for older rural women. 
  • Comparison of patient and surgeon perceptions of adverse events after adult spinal deformity surgery. 
  • Confronting obesity in children: behavioral and psychological factors. 
  • Cost-related health literacy: a key component of high-quality cancer care. 
  • Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB). 
  • Current Science on Consumer Use of Mobile Health for Cardiovascular Disease Prevention: A Scientific Statement From the American Heart Association. 
  • Decision making as coping. 
  • Decision making in pediatric oncology: who should take the lead? The decisional priority in pediatric oncology model. 
  • Decision-making by adolescents and parents of children with cancer regarding health research participation. 
  • Deficits and variations in patients' experience with making 9 common medical decisions: the DECISIONS survey. 
  • Design and implementation of a web-based patient portal linked to an ambulatory care electronic health record: patient gateway for diabetes collaborative care. 
  • Development of a decision aid to inform patients' and families' renal replacement therapy selection decisions. 
  • Dimensions of pain-related cognitive coping: cross-validation of the factor structure of the Coping Strategy Questionnaire. 
  • Direct observation of prognosis communication in palliative care: a descriptive study. 
  • Do Pediatric Patients Have a Right to Know? 
  • Do diabetic veterans use the Internet? Self-reported usage, skills, and interest in using My HealtheVet Web portal. 
  • Do patients participating in clinical trials want to know study results? 
  • Do unmet expectations for specific tests, referrals, and new medications reduce patients' satisfaction? 
  • Does Participation in a Randomized Clinical Trial Change Outcomes? An Evaluation of Patients Not Enrolled in the SPRINT Trial. 
  • Does participatory decision making improve hypertension self-care behaviors and outcomes? 
  • Economic evaluation of breast cancer treatment: considering the value of patient choice. 
  • Effect of cardiac rehabilitation on functional outcomes after coronary revascularization. 
  • Effectiveness of an Intervention Supporting Shared Decision Making for Destination Therapy Left Ventricular Assist Device: The DECIDE-LVAD Randomized Clinical Trial. 
  • Effectiveness of informational decision aids and a live donor financial assistance program on pursuit of live kidney transplants in African American hemodialysis patients. 
  • Effects of disclosing financial interests on attitudes toward clinical research. 
  • Effects of infertility, pregnancy loss, and patient concerns on family size of women with rheumatoid arthritis and systemic lupus erythematosus. 
  • Empowering communication: a community-based intervention for patients. 
  • Empowering patients to improve the quality of their care: design and implementation of a shared health maintenance module in a US integrated healthcare delivery network. 
  • Empowerment Failure: How Shortcomings in Physician Communication Unwittingly Undermine Patient Autonomy. 
  • End-stage renal disease treatment options education: What matters most to patients and families. 
  • Engaging Multidisciplinary Stakeholders to Drive Shared Decision-Making in Oncology. 
  • Engaging Survivors of Critical Illness in Health Care Assessment and Policy Development. Ethical and Practical Complexities. 
  • Engaging patients and families to create a feasible clinical trial integrating palliative and heart failure care: results of the ENABLE CHF-PC pilot clinical trial. 
  • Enhanced Patient Involvement and the Need to Revise the Core Set - Report from the Psoriatic Arthritis Working Group at OMERACT 2014. 
  • Enhancing enrollment in palliative care trials: key insights from a randomized, placebo-controlled study. 
  • Enhancing linkage and retention in HIV care: a review of interventions for highly resourced and resource-poor settings. 
  • Evaluating participants' use of a hormone replacement therapy decision-making intervention. 
  • Evidence-based medicine and primary care: keeping up is hard to do. 
  • Evidence-based risk communication: a systematic review. 
  • Examining behavioral processes through which lifestyle interventions promote weight loss: results from PREMIER. 
  • Examining the challenges of recruiting women into a cardiac rehabilitation clinical trial. 
  • Exercise training for chronic heart failure (ExTraMATCH II): protocol for an individual participant data meta-analysis. 
  • Exploring Meaningful Patient Engagement in ADAPTABLE (Aspirin Dosing: A Patient-centric Trial Assessing Benefits and Long-term Effectiveness). 
  • Exploring the "legacy" of the Tuskegee Syphilis Study: a follow-up study from the Tuskegee Legacy Project. 
  • Facilitating research participation and improving quality of life for African American prostate cancer survivors and their intimate partners. A pilot study of telephone-based coping skills training. 
  • Factors That Predict Satisfaction With Medical Care: Data From 27,212 Injured Workers Surveyed for 14 Years. 
  • Factors affecting patient enrollment in radiology clinical trials: a case study of the American College of Radiology Imaging Network. 
  • Factors associated with African Americans' enrollment in a national cancer genetics registry. 
  • Factors associated with choice of web or print intervention materials in the healthy directions 2 study. 
  • Fibromyalgia syndrome. 
  • Focus groups with African American adolescents: enhancing recruitment and retention in intervention studies. 
  • Follow YOUR Heart: development of an evidence-based campaign empowering older women with HIV to participate in a large-scale cardiovascular disease prevention trial. 
  • Giving Patients a Meaningful Voice in European Health Technology Assessments: The Role of Health Preference Research. 
  • Giving Patients a Meaningful Voice in United States Regulatory Decision Making: The Role for Health Preference Research. 
  • Guidelines for STEMI. 
  • Health Insurance Incentives to Enhance Patient Engagement. 
  • Health data use, stewardship, and governance: ongoing gaps and challenges: a report from AMIA's 2012 Health Policy Meeting. 
  • Helping patients take control of their medical records. A case study of a personal health organizer. 
  • Homework Completion, Patient Characteristics, and Symptom Change in Cognitive Processing Therapy for PTSD. 
  • How can we draw the line between clinical care and medical research. 
  • How preliminary data affect people's stated willingness to enter a hypothetical randomized controlled trial. 
  • How proxies make decisions about research for patients with Alzheimer's disease. 
  • How to reduce the risk of failing to reach recruitment targets: lessons learnt from a pump pilot trial. 
  • Identification of women at increased risk for breast cancer in a population-based screening program. 
  • Impact of advance care planning on the care of patients with heart failure: study protocol for a randomized controlled trial. 
  • Impact of an interactive video on decision making of patients with ischemic heart disease. 
  • Improving understanding of adjuvant therapy options by using simpler risk graphics. 
  • In Support of a Patient-Driven Initiative and Petition to Lower the High Price of Cancer Drugs. 
  • Incorporation of patient preferences in the treatment of upper urinary tract calculi: a decision analytical view. 
  • Increasing Health Portal Utilization in Cardiac Ambulatory Patients: A Pilot Project. 
  • Information giving and receiving in hematological malignancy consultations. 
  • Informed Decision Making: Assessment of the Quality of Physician Communication about Prostate Cancer Diagnosis and Treatment. 
  • Integrative medicine: bringing medicine back to its roots. 
  • Interest in genetic prostate cancer susceptibility testing among african American men. 
  • Interview by Marilyn H. Oermann with Suzanne Delbanco, PhD, executive director of The Leapfrog Group. 
  • Investigation momentum: the relentless pursuit to resolve uncertainty. 
  • Is diabetes associated with poorer self-efficacy and motivation for physical activity in older adults with arthritis? 
  • Is information always a good thing? Helping patients make "good" decisions. 
  • Let's Talk about Inclusion: A Report on Patient Research Partner Involvement in the GRAPPA 2015 Annual Meeting. 
  • Letting the genome out of the bottle. 
  • Level of participation in physical therapy or an internet-based exercise training program: associations with outcomes for patients with knee osteoarthritis. 
  • Life-sustaining therapy. A model for appropriate use. 
  • Literacy and informed consent: a case for literacy screening in glaucoma research. 
  • Making epidemiologic studies responsive to the needs of participants and communities: the Carolina Breast Cancer Study experience. 
  • Management of ductal carcinoma in situ. 
  • Management of fibromyalgia. 
  • Management of gastrointestinal symptoms in advanced cancer patients: the rapid learning cancer clinic model. 
  • Managing the epileptic patient. 
  • Manifestations and implications of uncertainty for improving healthcare systems: an analysis of observational and interventional studies grounded in complexity science. 
  • Measure once, cut twice--adding patient-reported outcome measures to the electronic health record for comparative effectiveness research. 
  • Measures of Appropriateness and Value for Breast Surgeons and Their Patients: The American Society of Breast Surgeons Choosing Wisely (®) Initiative. 
  • Measuring numeracy without a math test: development of the Subjective Numeracy Scale. 
  • Medical Facts versus Value Judgments--Toward Preference-Sensitive Guidelines. 
  • Medicare data transparency may confuse consumers comparing hospitals for total joint arthroplasty. 
  • Mind the child: using interactive technology to improve child involvement in decision making about life-limiting illness. 
  • Misimagining the unimaginable: the disability paradox and health care decision making. 
  • Moving forward with clinical IT on multiple fronts. An interview with Asif Ahmad and Kevin Schulman, M.D., Duke University Health System/Duke University. Interview by Mark Hagland. 
  • National Cancer Institute Patient Navigation Research Program: methods, protocol, and measures. 
  • Neonatal outcomes associated with planned vaginal versus planned primary cesarean delivery. 
  • No-suicide contracts: an overview and recommendations. 
  • Not all participatory styles are created equal. 
  • Novel Models for Health Care Delivery for CKD for Disadvantaged Populations. 
  • Numeric, verbal, and visual formats of conveying health risks: suggested best practices and future recommendations. 
  • Older adults and their families in a community mental health center: strategies for intervention. 
  • Open Oncology Notes: A Qualitative Study of Oncology Patients' Experiences Reading Their Cancer Care Notes. 
  • Outcomes research related to patient decision making in oncology. 
  • Participation in Cancer Pharmacogenomic Studies: A Study of 8456 Patients Registered to Clinical Trials in the Cancer and Leukemia Group B (Alliance). 
  • Participation in Cardiac Rehabilitation Programs Among Older Patients After Acute Myocardial Infarction. 
  • Participation in a women's breast cancer risk counseling trial. Who participates? Who declines? High Risk Breast Cancer Consortium. 
  • Participation in surgical oncology clinical trials: gender-, race/ethnicity-, and age-based disparities. 
  • Participation in trauma research: is there evidence of harm? 
  • Participation rates in a case-control study: the impact of age, race, and race of interviewer. 
  • Patient Decision Aids: A Case for Certification at the National Level in the United States. 
  • Patient Engagement Practices in Clinical Research among Patient Groups, Industry, and Academia in the United States: A Survey. 
  • Patient Preferences for Features of Health Care Delivery Systems: A Discrete Choice Experiment. 
  • Patient Preferences in Treatment Choices for Early-Stage Lung Cancer. 
  • Patient and family communication during consultation visits: The effects of a decision aid for treatment decision-making for localized prostate cancer. 
  • Patient choice of breast cancer treatment: impact on health state preferences. 
  • Patient detection of a drug dispensing error by use of physician-provided drug samples. 
  • Patient engagement and study design of PROP UP: A multi-site patient-centered prospective observational study of patients undergoing hepatitis C treatment. 
  • Patient experiences with pulmonary fibrosis. 
  • Patient input into the development and enhancement of ED discharge instructions: a focus group study. 
  • Patient participation in psoriasis and psoriatic arthritis outcome research: a report from the GRAPPA 2013 Annual Meeting. 
  • Patient portals: survey of nursing informaticists. 
  • Patient self-management support: novel strategies in hypertension and heart disease. 
  • Patient- and trial-specific barriers to participation in cardiovascular randomized clinical trials. 
  • Patient-Informed Treatment Development of Behavioral Smoking Cessation for People With Schizophrenia. 
  • Patient-Physician Communication on Medication Cost during Glaucoma Visits. 
  • Patients' Views Concerning Research on Medical Practices: Implications for Consent. 
  • Patients' perceptions of safety if interpersonal continuity of care were to be disrupted. 
  • Patients' willingness to participate in placebo-controlled trials of antihypertensive therapy. 
  • Patterns of breast carcinoma treatment in older women: patient preference and clinical and physical influences. 
  • Pelvic floor disorders clinical trials: participant recruitment and retention. 
  • Perceptions of patients and physicians regarding phase I cancer clinical trials: implications for physician-patient communication. 
  • Personality and health care decision-making style. 
  • Perspectives about complementary and alternative medicine in rheumatology. 
  • Phase I participants' views of quality of life and trial participation burdens. 
  • Physician Recommendations Trump Patient Preferences in Prostate Cancer Treatment Decisions. 
  • Physician communication styles in initial consultations for hematological cancer. 
  • Physicians' attitudes about shared decision making for prostate cancer screening. 
  • Potential effects of decreased cervical cancer screening participation after HPV vaccination: an example from the U.S. 
  • Practice-linked online personal health records for type 2 diabetes mellitus: a randomized controlled trial. 
  • Predictors of hospitalised patients' preferences for physician-directed medical decision-making. 
  • Presenting quantitative information about decision outcomes: a risk communication primer for patient decision aid developers. 
  • Principal/agent theory and decision making in health care. 
  • Prior capacity of patients lacking decision making ability early in hospitalization: implications for advance directive administration. The SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. 
  • Prostate cancer screening. 
  • Psychiatric advance directives: a tool for consumer empowerment and recovery. 
  • Quality of life after surgery for genital prolapse in elderly women: obliterative and reconstructive surgery. 
  • Randomized trial showed requesting medical records with a survey produced a more representative sample than requesting separately. 
  • Rationale and study protocol for the Patient-Centered Outcome Aid (PCOA) randomized controlled trial: A personalized decision tool for newly diagnosed ovarian cancer patients. 
  • Re: "Factor analysis of self-reported symptoms: does it identify a Gulf War syndrome?". 
  • Recommendations for the Involvement of Patient Research Partners (PRP) in OMERACT Working Groups. A Report from the OMERACT 2014 Working Group on PRP. 
  • Recruiting intergenerational African American males for biomedical research Studies: a major research challenge. 
  • Recruitment and retention of participants in a pragmatic randomized intervention trial at three community health clinics: results and lessons learned. 
  • Relationship between cancer patients' predictions of prognosis and their treatment preferences. 
  • Relative validity of the modified American Shoulder and Elbow Surgeons (M-ASES) questionnaire using item response theory. 
  • Remission in Rheumatoid Arthritis: Working Toward Incorporation of the Patient Perspective at OMERACT 12. 
  • Remote monitoring of cardiac implantable electronic devices (CIED). 
  • Rethinking the objectives of decision aids: a call for conceptual clarity. 
  • Risk communication in clinical trials: a cognitive experiment and a survey. 
  • Risk profile of clinical trial participants--reply. 
  • Select Choices in Benign Breast Disease: An Initiative of the American Society of Breast Surgeons for the American Board of Internal Medicine Choosing Wisely® Campaign. 
  • Sex differences in incidence, pathophysiology, and outcome of primary intracerebral hemorrhage. 
  • Sexuality talk during adolescent health maintenance visits. 
  • Shared Decision Making to Improve the Emergency Care of Older Adults: A Research Agenda. 
  • Shared decision making in atrial fibrillation: where we are and where we should be going. 
  • Shared decision-making in end-stage renal disease: a protocol for a multi-center study of a communication intervention to improve end-of-life care for dialysis patients. 
  • So different, yet so similar: meta-analysis and policy modeling of willingness to participate in clinical trials among Brazilians and Indians. 
  • Stigma in leprosy: miles to go! 
  • Study of the media's potential influence on prospective research participants' understanding of and motivations for participation in a high-profile phase I trial. 
  • Studying ulcerative colitis over the World Wide Web. 
  • Successful recruitment strategies for women in postpartum mental health trials. 
  • Superseding psychiatric advance directives: ethical and legal considerations. 
  • Survey of long-term follow-up programs in the United States for survivors of childhood brain tumors. 
  • Tackling Patient Centricity: A Report from the GRAPPA 2016 Annual Meeting. 
  • Tailored navigation in colorectal cancer screening. 
  • The Cholesterol, Hypertension, and Glucose Education (CHANGE) study for African Americans with diabetes: study design and methodology. 
  • The Clinical Trials Transformation Initiative: Looking back, looking forward. 
  • The Diagnosis and Management of Patients with Renal Colic across a Sample of US Hospitals: High CT Utilization Despite Low Rates of Admission and Inpatient Urologic Intervention. 
  • The Feasibility and Acceptability of Using Technology-Based Daily Diaries with HIV-Infected Young Men Who have Sex with Men: A Comparison of Internet and Voice Modalities. 
  • The Need for Pediatric Drug Development. 
  • The Patient Research Partner Network Matures: A Report from the GRAPPA 2017 Annual Meeting. 
  • The Patient Self-Determination Act and the future of advance directives. 
  • The Physician Recommendation Coding System (PhyReCS): A Reliable and Valid Method to Quantify the Strength of Physician Recommendations During Clinical Encounters. 
  • The Rules of Engagement: CTTI Recommendations for Successful Collaborations Between Sponsors and Patient Groups Around Clinical Trials. 
  • The Take Control of Your Blood pressure (TCYB) study: study design and methodology. 
  • The cancer aging interface: a research agenda. 
  • The clinical librarian and the patient: report of a project at McMaster University Medical Centre. 
  • The correlation between patient characteristics and expectations of benefit from Phase I clinical trials. 
  • The impact of the format of graphical presentation on health-related knowledge and treatment choices. 
  • The perception of cancer risk in patients with prevalent Barrett's esophagus enrolled in an endoscopic surveillance program. 
  • The providing resources to enhance African American patients' readiness to make decisions about kidney disease (PREPARED) study: protocol of a randomized controlled trial. 
  • The role of decision analysis in informed consent: choosing between intuition and systematicity. 
  • The role of perceived benefits and costs in patients' medical decisions. 
  • The stability of DNR orders on hospital readmission. The SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. 
  • Travelers with sickle cell disease. 
  • Treatment of type 2 diabetes mellitus. 
  • Treatment participation and medication adherence: effects on criminal justice costs of persons with mental illness. 
  • Triangulating differential nonresponse by race in a telephone survey. 
  • Understanding of an aggregate probability statement by patients who are offered participation in Phase I clinical trials. 
  • Understanding patient preferences for femoral central venous catheterization among patients with sickle cell disease. 
  • Understanding the role of numeracy in health: proposed theoretical framework and practical insights. 
  • Use of the Internet by patients before and after cardiac surgery: telephone survey. 
  • Using evidence-based algorithms to improve clinical decision making: the case of a first-time anterior shoulder dislocation. 
  • Using survival curve comparisons to inform patient decision making can a practice exercise improve understanding? 
  • Using the Internet to teach consumers about quality care. 
  • Validating Rheumatoid Arthritis Remission Using the Patients' Perspective: Results from a Special Interest Group at OMERACT 2016. 
  • Validation of the Subjective Numeracy Scale: effects of low numeracy on comprehension of risk communications and utility elicitations. 
  • Variation in estimates of limited health literacy by assessment instruments and non-response bias. 
  • Views of older adults on patient participation in medication-related decision making. 
  • Voices in the record. 
  • Weight loss with self-help compared with a structured commercial program: a randomized trial. 
  • What is the role of culture, diversity, and community engagement in transdisciplinary translational science? 
  • What leads Indians to participate in clinical trials? A meta-analysis of qualitative studies. 
  • What to say and how to say it: effective communication for cardiovascular disease prevention. 
  • Who will enroll? Predicting participation in a phase II AIDS vaccine trial. 
  • Willingness to participate in biomedical HIV prevention studies after the HVTN 503/Phambili trial: a survey conducted among adolescents in Soweto, South Africa. 
  • Willingness to participate in cardiac trials. 
  • Withholding versus withdrawing life-sustaining treatment: patient factors and documentation associated with dialysis decisions. 
  • Women's views about participating in research while pregnant. 
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  Keywords of People

  • Barfield, Raymond Carlton, Professor of Pediatrics, Duke Science & Society
  • Moorman, Patricia Gripka, Professor in Family Medicine and Community Health, Duke Cancer Institute
  • Olsen, Maren Karine, Associate Professor of Biostatistics and Bioinformatics, Biostatistics & Bioinformatics
  • Preminger, Glenn Michael, James F. Glenn, M.D. Professor of Urology, Surgery
  • Yancy Jr., William Samuel, Associate Professor of Medicine, Medicine, General Internal Medicine