Currently Viewing:
The American Journal of Managed Care January 2018
Measuring Overuse With Electronic Health Records Data
Thomas Isaac, MD, MBA, MPH; Meredith B. Rosenthal, PhD; Carrie H. Colla, PhD; Nancy E. Morden, MD, MPH; Alexander J. Mainor, JD, MPH; Zhonghe Li, MS; Kevin H. Nguyen, MS; Elizabeth A. Kinsella, BA; and Thomas D. Sequist, MD, MPH
The Health Information Technology Special Issue: Has IT Become a Mandatory Part of Health and Healthcare?
Jacob Reider, MD
Bridging the Digital Divide: Mobile Access to Personal Health Records Among Patients With Diabetes
Ilana Graetz, PhD; Jie Huang, PhD; Richard J. Brand, PhD; John Hsu, MD, MBA, MSCE; Cyrus K. Yamin, MD; and Mary E. Reed, DrPH
Electronic Health Record "Super-Users" and "Under-Users" in Ambulatory Care Practices
Juliet Rumball-Smith, MBChB, PhD; Paul Shekelle, MD, PhD; and Cheryl L. Damberg, PhD
Electronic Sharing of Diagnostic Information and Patient Outcomes
Darwyyn Deyo, PhD; Amir Khaliq, PhD; David Mitchell, PhD; and Danny R. Hughes, PhD
Hospital Participation in Meaningful Use and Racial Disparities in Readmissions
Mark Aaron Unruh, PhD; Hye-Young Jung, PhD; Rainu Kaushal, MD, MPH; and Joshua R. Vest, PhD, MPH
A Cost-Effectiveness Analysis of Cardiology eConsults for Medicaid Patients
Daren Anderson, MD; Victor Villagra, MD; Emil N. Coman, PhD; Ianita Zlateva, MPH; Alex Hutchinson, MBA; Jose Villagra, BS; and J. Nwando Olayiwola, MD, MPH
Electronic Health Record Problem Lists: Accurate Enough for Risk Adjustment?
Timothy J. Daskivich, MD, MSHPM; Garen Abedi, MD, MS; Sherrie H. Kaplan, PhD, MPH; Douglas Skarecky, BS; Thomas Ahlering, MD; Brennan Spiegel, MD, MSHS; Mark S. Litwin, MD, MPH; and Sheldon Greenfield, MD
Racial/Ethnic Variation in Devices Used to Access Patient Portals
Eva Chang, PhD, MPH; Katherine Blondon, MD, PhD; Courtney R. Lyles, PhD; Luesa Jordan, BA; and James D. Ralston, MD, MPH
Currently Reading
Hospitalized Patients' and Family Members' Preferences for Real-Time, Transparent Access to Their Hospital Records
Michael J. Waxman, MD, MPH; Kurt Lozier, MBA; Lana Vasiljevic, MS; Kira Novakofski, PhD; James Desemone, MD; John O'Kane, RRT-NPS, MBA; Elizabeth M. Dufort, MD; David Wood, MBA; Ashar Ata, MBBS, PhD; Louis Filhour, PhD, RN; & Richard J. Blinkhorn Jr, MD

Hospitalized Patients' and Family Members' Preferences for Real-Time, Transparent Access to Their Hospital Records

Michael J. Waxman, MD, MPH; Kurt Lozier, MBA; Lana Vasiljevic, MS; Kira Novakofski, PhD; James Desemone, MD; John O'Kane, RRT-NPS, MBA; Elizabeth M. Dufort, MD; David Wood, MBA; Ashar Ata, MBBS, PhD; Louis Filhour, PhD, RN; & Richard J. Blinkhorn Jr, MD
This mixed-methods study evaluated hospitalized patients’ and family members’ perceived communications mismatches and their calls for transparent real-time information and potential 21st-century solutions.

To better understand patient satisfaction and perceived engagement with traditional hospital-based communication and to elicit patient preferences for health information technologies that would lead to improved satisfaction and engagement.

Study Design: We performed a mixed-methods study involving qualitative interviews followed by a survey of hospitalized patients and their family members at a single large academic medical center. 

Methods: We conducted semi-structured interviews with 41 patients and surveyed 267 patients or family members to elicit their perspectives on satisfaction with traditional hospital communication methods, information needed to more fully engage in the patients' medical care, and potential solutions for improved hospital-based communication. 

Results: Qualitative interviews revealed patients’ and family members’ dissatisfaction with current hospital-based communication methods. They would prefer more information, in more flexible forms, with real-time digital access and the ability to share within their social and healthcare networks. Quantitative results from the survey supported these premises, with at least the majority of the 267 patients surveyed agreeing across each survey question. Furthermore, participants identified a “communications point person” as the individual who organizes, understands, and communicates about the patient’s care, who was often a family member not available at the bedside during daily rounds. Potential solutions included improved transparency about hospital processes, creating systems that allow patients and family to help coordinate and double-check their own health-related communications, and delivering hospital-based communications through digital media. 

Conclusions: These study findings provide empiric evidence to hospital decision-makers regarding patient and family preferences for 21st-century hospital-based communication systems. 

Am J Manag Care. 2018;24(1):e17-e23
Takeaway Points
  • Patients and family members perceived mismatches between current hospital communications and their expectations.
  • Hospitalized patients and family members wanted to be more engaged in the patients' healthcare and perceived that enhanced, transparent, and easy-to-access information would help them accomplish this goal.
  • Hospital policy-makers should consider communication platforms that better meet the needs of patients and family members.
With the goal of engaging patients and family members to more fully participate in their own healthcare and improve health-related behaviors, Meaningful Use regulations encourage enhanced communication with patients and family via health information technologies, such as patient portals.1 Accordingly, outpatient-based patient portals have been shown to be effective in engaging patients through transparent access to medical records.2-8

Despite well-documented success in outpatient settings, few study findings show successful large-scale implementation of hospital-based patient portals.9-12 Although the reasons for generalized low engagement by hospitalized patients and family members are not fully understood and may be multifactorial, some authors have suggested that hospital-based patient portals have not been created to optimize user functionality.13 Gaps remain in knowledge regarding how to effectively engage patients and family members, the level of information that would improve patient satisfaction and outcomes, and specific health information technology platforms that are most effective in the hospital setting. 

Our study aimed to better understand 1) patient satisfaction and perceived engagement with traditional hospital-based communications and 2) patient preferences for transparent data and health information technologies that would lead to improved patient satisfaction and enhanced engagement in the hospital setting.


We performed a mixed-methods study of hospitalized patients and their family members at a single large academic medical center with a daily census of approximately 640 inpatients. First, we conducted a qualitative analysis of 41 participant interviews to explore the range of ideas perceived by patients and family members. Second, we employed random sampling and surveyed 267 participants to quantify the proportion of hospitalized patients and family members who agreed with each of the major ideas developed during the qualitative analysis. All research activities were approved by the Albany Medical College institutional review board. 

Qualitative Interviews 

Our research team first performed qualitative interviews with a convenience sample of 41 hospitalized patients and their family members on the medical nursing units from November 2014 to February 2015. Participants were recruited until the study investigators, who met periodically during the data collection period, determined that saturation in the answers to the open-ended questions had been reached and no new concepts were discovered. The qualitative interviews were done using a semi-structured format, with responses recorded in real time. Individual concepts were categorized into discrete themes, and a qualitative analysis was performed. Three study investigators participated in coding of themes and subthemes, and a fourth investigator reviewed coded themes for inconsistencies (further detail of the qualitative analysis can be found in the eAppendix [available at]).

Quantitative Survey Development

Based on the results of this qualitative analysis, we developed a quantitative survey for patients (or their family members) that consisted of questions related to 3 distinct overarching themes identified in the initial qualitative interviews: 1) satisfaction with traditional hospital communication methods, 2) perspectives on information needed to more fully engage in their medical care, and 3) potential solutions for improved hospital-based communication. 

The quantitative survey instrument was refined in an iterative fashion using the input of an additional 93 patients and family members. This included cognitively testing the survey questions on sequential potential participants until the research team was confident that there was appropriate content, comprehension, and quality (61 participants)14 and pilot-testing the entire survey to ensure clarity and prevent survey fatigue (32 participants). 

Patient Selection for Quantitative Survey

Patients were randomly selected (using a random number generator) daily from the medical nursing units between 9 am and 5 pm from January 2016 to May 2016. Patients were included if they were 18 years or older, admitted more than 48 hours prior to the time of screening, and English-speaking. Only 1 study participant (either the patient or a family member) was allowed per hospitalized patient. Patients who were deemed to not have capacity to answer questions (based on nursing assessment) and who did not have a family member at the bedside were excluded. When a family member was available, patients were given the option to complete the survey themselves or to have a family member complete it. Verbal consent was obtained by a trained research assistant. 

Data Collection and Analysis of Quantitative Survey

The survey was administered on an iPad, with the research assistant available to assist as needed. Age was sorted, in part, by generational labeling: under 27 years (Millennial), 28 to 51 years (Generation X), 52 to 70 years (Baby Boomer), 71 to 88 years, and over 88 years.

Three survey questions had answers of “Yes,” “No,” or “This does not concern me.” Twenty-three survey questions had standardized “Agree” answers on a 4-point Likert scale, with the additional option of “This does not concern me.” Through the cognitive testing of the survey questions mentioned above, we developed the option of “This does not concern me” for situations in which either the participant did not have an opinion or the question raised a scenario that was not applicable to their medical care. When appropriate, to dichotomize results, “Strongly agree” and “Agree” were grouped together to indicate the response as “Agree.” We analyzed survey responses by respondent characteristics using a χ2 analysis. Data analysis was performed using Stata version 14.0 (StataCorp LLC; College Station, Texas).


Participant Characteristics and Patient Demographics

For the qualitative interviews, there were 4 patients aged 18 or 19 years, 5 patients aged 20 to 39 years, 10 patients aged 40 to 59 years, 15 patients aged 60 to 79 years, and 6 patients 80 years or older (categorical age was missing for 1 patient). Forty-five percent of the patients were female (gender status was missing for 1 patient). 

The final sample of 267 survey participants included 216 (81%) patients and 51 (19%) family members. Figure 1 depicts the flow of participant eligibility assessment, recruitment, enrollment, and survey participation. Table 1 lists participant characteristics and patient demographics.

Satisfaction With Traditional Hospital Communication Methods

The initial qualitative analysis revealed that patients and family members were dissatisfied with current hospital communication methods. In particular, respondents felt that important information about their healthcare was not being communicated to them and expressed frustration with face-to-face interactions as the sole mode of communication. Participants felt this process lacked effectiveness both in understanding the complexity of their medical care and in relaying important health information to family members and the patient’s health support network. 

Additional quantitative analysis supported these findings. Although the majority of patients agreed that they knew why they were taking each medication in the hospital and why each test was being done, 63% felt that there was more information available than was being communicated by their care team, and 71% reported that they sometimes forgot information the doctor told them. Furthermore, only 38% of participants perceived that it was easy to contact their doctor outside of their daily interactions and less than half (46%) that it was easy to coordinate with their entire healthcare team and health support network regarding their discharge planning (Figure 2).

Defining the Communications Point Person 

A second overarching theme identified in the qualitative analysis was the importance of an individual who served as the communications hub to relay the patient’s health information to family, the patient’s healthcare providers, and others within the patient’s health support network. Patients and family identified circumstances in which a family member was not necessarily the medical decision-maker for the patient, but was responsible for coordinating among all involved parties. We have termed this the communications point person (CPP), defined as the person who organizes, understands, and communicates about the patient’s care. 

In support of this concept, the quantitative survey found that 182 (68%) participants identified someone other than the patient (family member, friend, or other) as the CPP, whereas 85 (32%) identified the patient as the CPP (Table 2). Of those who identified someone other than the patient, respondents identified the CPP as a spouse (38%), daughter (32%), son (14%), parent (11%), sister (8%), partner (6%), brother (2%), or another person (defined as friend, cousin, nephew, niece, or grandparent) (15%). (Participants were able to identify more than 1 CPP, producing a total greater than 100%.)

Of the 182 participants for whom the CPP was someone other than the patient, information was elicited on CPP availability for face-to-face in-hospital communication. Responses indicated CPP availability during the morning (39%), afternoon (45%), evening (41%), or night (6%). (Participants were able to identify more than 1 time of day, for a total greater than 100%.) Additionally, 30% of respondents reported that the CPP’s availability varied by day and 7% of respondents reported that their CPP was unable to be at the hospital at all. 

Information Required by Patients/Family Members to Be Engaged in Their Medical Care

Copyright AJMC 2006-2020 Clinical Care Targeted Communications Group, LLC. All Rights Reserved.
Welcome the the new and improved, the premier managed market network. Tell us about yourself so that we can serve you better.
Sign Up