scholarly journals Realizing the full potential of precision health: The need to include patient-reported health behavior, mental health, social determinants, and patient preferences data

2018 ◽  
Vol 2 (3) ◽  
pp. 183-185 ◽  
Author(s):  
Russell E. Glasgow ◽  
Bethany M. Kwan ◽  
Daniel D. Matlock

Precision health and big data approaches have great potential, yet such benefits will be realized only when social and behavioral determinants of health and patient preferences are combined with genomic information. Literature review and co-author experiences informed this commentary. Validated health behavior, mental health, and patient preference measures were collected and summarized in real time. Integration of such data into existing data sets will advance precision health, patient-centered care, research, and policy.

Author(s):  
Victor Okunrintemi ◽  
Erica Spatz ◽  
Joseph Salami ◽  
Haider Warraich ◽  
Salim Virani ◽  
...  

Background: With recent enactment of Accountable Care Act, consumer reported patient-provider communication (PPC) assessed by Consumer Assessment of Health Plans Survey (CAHPS) in ambulatory settings is incorporated as a complementary value metric for patient-centered care of chronic conditions in pay-for-performance programs. In this study, we examine the relationship of PPC with select indicators of patient-centered care in a nationally representative adult US population with established atherosclerotic cardiovascular disease (ASCVD). Methods: The study population consisted of a nationally representative sample of 8223 individuals (age ≥ 18 years) representing 21.6 million with established ASCVD (self-reported or ICD-9 diagnosis) reporting a usual source of care in the 2010-2013 pooled Medical Expenditure Panel Survey (MEPS) cohort. Participants responded to questions from CAHPS that assess satisfaction with PPC (four-point response scale: never, sometimes, usually, always ) :(1) “How often providers show respect for what you had to say” (2) “How often health care providers listened carefully to you” (3) “How often health care providers explained things so you understood” (4) “How often health providers spent enough time with you” We developed a weighted PPC composite score, categorized as 1 ( never / sometimes ), 2 ( usually ), and 3 ( always ). Outcomes of interest were 1) patient reported outcomes (PRO): SF-12 physical/mental health status, 2) quality of care measures: statin and ASA use, 3) health-care resource utilization (HRU): Emergency room visits & hospital stays, 4) total annual and out of pocket healthcare expenditures (HCE). Results: As shown in the table, those with ASCVD reporting ineffective (never/sometimes) vs. effective PCC (always) were over 2-fold more likely to report poor PRO, 34% & 22% less likely to report statin and ASA use respectively, had a significantly greater HRU (OR≥ 2 ER visit: 1.40 [95% CI:1.09-1.80], OR≥ 2 hospitalization: 1.35 [95% CI:1.02-1.77], as well as an estimated $1,294 ($121-2468) higher annual HCE. Conclusion: This study reveals a strong relationship between patient-physician communication among those with established ASCVD with patient-reported outcomes, utilization of evidence based therapies, healthcare resource utilization and expenditures.


2014 ◽  
Vol 27 (5) ◽  
pp. 637-644 ◽  
Author(s):  
R. Kessler ◽  
B. F. Miller ◽  
M. Kelly ◽  
D. Graham ◽  
A. Kennedy ◽  
...  

2015 ◽  
Vol 23 (1) ◽  
pp. 38-47 ◽  
Author(s):  
Andrea L Hartzler ◽  
Jason P Izard ◽  
Bruce L Dalkin ◽  
Sean P Mikles ◽  
John L Gore

Abstract Objective Patient-reported outcomes (PROs) are a valued source of health information, but prior work focuses largely on data capture without guidance on visual displays that promote effective PRO use in patient-centered care. We engaged patients, providers, and design experts in human-centered design of “PRO dashboards” that illustrate trends in health-related quality of life (HRQOL) reported by patients following prostate cancer treatment. Materials and Methods We designed and assessed the feasibility of integrating dashboards into care in 3 steps: (1) capture PRO needs of patients and providers through focus groups and interviews; (2) iteratively build and refine a prototype dashboard; and (3) pilot test dashboards with patients and their provider during follow-up care. Results Focus groups ( n = 60 patients) prioritized needs for dashboards that compared longitudinal trends in patients’ HRQOL with “men like me.” Of the candidate dashboard designs, 50 patients and 50 providers rated pictographs less helpful than bar charts, line graphs, or tables ( P < .001) and preferred bar charts and line graphs most. Given these needs and the design recommendations from our Patient Advisory Board ( n = 7) and design experts ( n = 7), we built and refined a prototype that charts patients’ HRQOL compared with age- and treatment-matched patients in personalized dashboards. Pilot testing dashboard use ( n = 12 patients) improved compliance with quality indicators for prostate cancer care ( P < .01). Conclusion PRO dashboards are a promising approach for integrating patient-generated data into prostate cancer care. Informed by human-centered design principles, this work establishes guidance on dashboard content, tailoring, and clinical use that patients and providers find meaningful.


Author(s):  
Gary Epstein-Lubow ◽  
Elizabeth Tobin-Tyler

Providing patient-centered care for an elderly individual with a mental health condition requires clinicians and family caregivers to work together. This chapter provides a description of a mental health treatment model, the triadic model of caregiving, in which service delivery for a patient includes clinicians communicating with family members or caregivers. Description of the mental health workforce to support patient-centered care is provided along with laws and policies that support family caregivers in their aid of patients. The associated legal responsibilities and ethical issues related to working with patients who have impaired decision-making capacity due to a mental health or substance use condition are explained, including capacity, competence, informed consent, advance care planning, guardianship, fiduciary responsibilities, and ethical concerns.


2017 ◽  
Vol 25 (1) ◽  
pp. 94-95
Author(s):  
Melissa G. French

Abstract Health literacy and palliative care have been receiving more attention within health care organizations and systems in recent years. Both can offer a pathway to care that is better for patients and has the potential to be of high value. A health literate approach to palliative care provides patient-centered care that is better aligned with patient preferences and needs.


2005 ◽  
Vol 3 (4) ◽  
pp. 289-299 ◽  
Author(s):  
KAREN M. KNOPS ◽  
MALATHI SRINIVASAN ◽  
FREDRICK J. MEYERS

Objective: Patient-centered care is better achieved through a comprehensive understanding of patients' preferences for how they want to live their life and how they want to influence their own death. Though much has been written on identifying goals of care, it is often difficult for clinicians to articulate patient goals to guide care planning. We explored the literature on patient's preferences for their care in chronic or life-limiting illness to develop a model for assessment of patient perspectives. We then illustrated our model with composite patients from our clinics and we provide questions to guide patient discussion.Methods: We searched MEDLINE from 1986 to 2004 for primary research articles that relate primarily to a patient's preferences for his or her care. We reviewed over 3500 titles, abstracts, and research papers. Hundreds of articles described patients' quality of life, health status, or satisfaction. We excluded consensus guidelines, non-English papers, reviews, and articles focused on medical professional perspectives. Forty-eight studies focused primarily on patient preferences. Using an iterative process, we identified unique issues and broader themes in patients' desires for their care.Results: Studies focused on patients with cancer, those in hospice or those with terminal disease. Three domains emerged: patient feelings about disease, feelings about suffering, and feelings about the circumstances of death. Attention was given to the differences between patients in terms of the strength and persistence of feelings in each domain.Significance of results: Based on existing data, there are three fundamental domains of patient perspective that influence preferences for care. These domains can be assessed by the care team to guide the development of a plan of care and to identify areas of conflict. Our review identifies gaps in the end-of-life literature and areas for future work in patient preferences.


Author(s):  
Michael de Riesthal ◽  
Katherine B. Ross

In her seminal book on outcome measurement in the field of communication disorders, Carol Frattali (1998) set the path for outcomes research and clinical application in the field of speech-language pathology. In particular, she defined the many possible outcomes that can be measured to examine the influence of an intervention and the ways in which these measures can inform public policy. Of these, patient or client centered measures, which index outcome based on the patient's and family's or caregiver's perspective, have received increasing attention in recent research and clinical practice. These measures examine a variety of patient reported outcomes (PRO) associated with health. PRO measures are being used more commonly in clinical practice and as end points in medical and rehabilitation outcomes research. This perspective reflects the shift in medicine and rehabilitation toward patient-centered care. In this article, we will examine the rationale for using PRO measures, the advantages and challenges for using these tools, and current use of PRO measures in neurological communication disorders.


Author(s):  
Martin Krusche ◽  
Philipp Klemm ◽  
Manuel Grahammer ◽  
Johanna Mucke ◽  
Diana Vossen ◽  
...  

BACKGROUND The use of patient-reported outcomes (PROs) allows for patient-centered, measurable, and transparent care. Electronic PROs (ePROs) have many benefits and hold great potential to improve current usage of PROs, yet limited evidence exists regarding their acceptance, usage, and barriers among rheumatologists. OBJECTIVE This study aims to evaluate the current level of acceptance, usage, and barriers among German rheumatologists regarding the use of ePROs. The importance of different ePRO features for rheumatologists was investigated. Additionally, the most frequently used PROs for patients with rheumatoid arthritis (RA) were identified. METHODS Data were collected via an online survey consisting of 18 questions. The survey was completed by members of the Working Group Young Rheumatology of the German Society for Rheumatology (Arbeitsgemeinschaft Junge Rheumatologie der Deutschen Gesellschaft für Rheumatologie [DGRh]) at the 2019 annual DGRh conference. Only members currently working in clinical adult rheumatology were eligible to complete the survey. RESULTS A total of 119 rheumatologists completed the survey, of which 107 (89.9%) reported collecting PROs in routine practice and 28 (25.5%) already used ePROs. Additionally, 44% (43/97) were planning to switch to ePROs in the near future. The most commonly cited reason for not switching was the unawareness of suitable software solutions. Respondents were asked to rate the features of ePROs on a scale of 0 to 100 (0=unimportant, 100=important). The most important features were automatic score calculation and display (mean 77.50) and simple data transfer to medical reports (mean 76.90). When asked about PROs in RA, the respondents listed pain, morning stiffness, and patient global assessment as the most frequently used PROs. CONCLUSIONS The potential of ePROs is widely seen and there is great interest in them. Despite this, only a minority of physicians use ePROs, and the main reason for not implementing them was cited as the unawareness of suitable software solutions. Developers, patients, and rheumatologists should work closely together to help realize the full potential of ePROs and ensure a seamless integration into clinical practice.


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