Knowledge and experience with paper-based or electronic health records (EHRs) may influence women's engagement in their healthcare during the prenatal and postpartum period, creating a potential benefit for the woman and her entire family over time. However, there is little information about access to and perceived benefits of paper-based records or EHRs among underserved women at risk for poor perinatal outcomes. Health literacy is ability to access and understand basic health information and services needed to appropriately make health decisions and follow instructions (Institute of Medicine, 2011). In a national study, 41% of Hispanic adults were found to have below-basic health literacy compared with 9% of White adults (Kutner, Greenberg, Jin, & Paulsen, 2006). In a California Health Interview Survey study, 45.3% of Hispanic adults with limited English proficiency had low health literacy versus 18.8% of White adults (Sentell & Braun, 2012). Low health literacy in Hispanic women was associated with higher rates of prenatal depression and poorer family planning (Weiss, Sheehan, & Gushwa, 2009 ; Yee & Simon, 2014).
Electronic health records and patient portal functionality allow patients to review laboratory results, schedule appointments, and communicate with their providers via emails (Jhamb et al., 2015). In 2009, the United States Congress passed the Health Information Technology for Economic and Clinical Health (HITECH) Act to promote EHRs to improve quality of care, health outcomes, and patient safety (Peacock et al., 2017). Although federal public policy encourages wide adoption of health information technology, only 55% of national providers were using EHRs by 2014 (Kruse, Kothman, Anerobi, & Abanaka, 2016). There is limited research on effects of the EHR on pregnancy care. Meyerhoefer et al. (2017) found increased clinical information available from an integrated EHR system for healthcare providers (e.g., nonstress test results from office records available to hospital-based providers) was associated with decreased obstetric trauma and cesarean rates and improved birthweight and gestational age at birth. The potential relationship between an integrated EHR system and outcomes requires further research. Little is known about women's experiences with their health records (i.e., paper and electronic formats) during pregnancy and postpartum and any potential barriers they experience accessing their health record information.
Annually, MOMS Orange County (MOMS) provides prenatal and postnatal health education to an estimated 3,600 underserved pregnant women in Orange County, California. The MOMS program serves an important role in promoting health literacy and enhancing positive health outcomes. Growing research shows that underserved patients who are Hispanic, publicly insured, or have low health literacy are less likely to access health records (Garrido et al., 2015 ; Wallace et al., 2016). Women in the MOMS program are characterized by risk factors for low health literacy such as low education (Mas, Jacobson, & Dong, 2014). The objective of this study was to examine knowledge of and experiences with health record use among a largely underserved group of Hispanic perinatal women participating in the MOMS, California, prenatal and postpartum home visitation program.
A mixed method (survey and focus group) was used in this study. The University's Institutional Review Board approved the study procedures prior to implementation.
Study Setting and Participants
This study was conducted at MOMS. Women who met three criteria (served by MOMS during the study period, able to read and write in English or Spanish, and 18 years and older) were asked to participate.
We used both a survey and interview guide to collect data about women's knowledge of and experiences with health record data. The survey included three categories of information: (1) sociodemographics, (2) understanding of and access to health records, and (3) access to technology and preferences for storing health records. A semistructured interview guide for focus group discussions was used to supplement data from the surveys. Focus group topics included experiences with primary healthcare providers, understanding of health records, and perceived impact of access to health records.
Recruitment occurred between May and July 2015 through a study flyer posted at bulletin boards at MOMS and study flyers distributed to mothers who received prenatal and/or postnatal home visits at MOMS. Women who were interested in participating contacted a staff member at MOMS who spoke English and Spanish fluently. The Study Information Sheet was used to introduce the study purpose and procedure and to schedule focus groups. The first author trained two graduate nursing students who were fluent in both Spanish and English to facilitate focus group discussions using predesigned guidelines. At the beginning of each focus group, oral informed consent for participation was obtained. Each group lasted approximately 90 minutes. At the end of the focus groups, participants completed the survey and they were given a $30 gift card.
Survey data were analyzed using IBM SPSS, version 22.0 (SPSS, Armonk, NY). Descriptive statistics were used to summarize survey responses. Chi-square/Fisher's exact tests were conducted to compare significant differences in categorical variables between English and Spanish groups (n = 8 and 18, respectively). T-test analyses were used to compare differences in continuous variables between groups. Recordings of three focus groups were transcribed by a professional independent company (VerbalLink, Los Angeles, CA) with dialogue of two focus groups being translated from Spanish into English. Qualitative content analysis was conducted to summarize emerging themes. The first author and a coauthor coded transcripts independently and then met to discuss codings. Disagreements were resolved by reviewing transcripts together, tracking rationale for codes, and giving a new code when appropriate. After consensus on codes was reached in all cases, the same two researchers met to group common codes into themes (Elo & Kyngäs, 2008 ; Morales-Campos, Casillas, & McCurdy, 2009).
Sociodemographic Characteristics of Sample
Twenty-six women participated with 8 women in one English-speaking focus group and the remaining 18 women in two Spanish-speaking focus groups (8 and 10 subjects per group). The sample was primarily Hispanic (88.5%). Approximately two thirds were born outside the United States (69.2%) and were enrolled in a California Medicaid Program (65.4%); about one third (30.8%) did not have a high school diploma and 50% were married. The mean (SD) age and annual family income were 33.1 (6.3) and $26,228 ($21,820), respectively.
There were no differences between English- and Spanish-speaking focus groups in most sociodemographic characteristics except for two factors. Compared with their counterparts in English-speaking focus groups, participants in Spanish groups were all Hispanic (100% vs. 62.5%, p = 0.02), and nearly half did not have a high school diploma (44.4% vs. 0%, p = 0.03).
Health record knowledge and experiences. Twenty-four of the 26 perinatal women in our sample (92.3%) were aware of health records, and 88.5% knew that they could ask the healthcare providers for digital access or a print copy they could access at home. However, only two women (7.7%) had discussed health records with their primary healthcare provider. Approximately one third reported already keeping a copy of their health records. Most women (21, 80.8%) perceived keeping their health records would increase or greatly increase their confidence in caring for their health and that of their family. There was a difference between the groups in their current keeping of health records; among the 9 (34.6%) women who reported already keeping their health record, 6 (66.7%) subjects were in the English focus group and 3 (33.3%) subjects in the Spanish groups (p = 0.003).
Technology and preferences for storing health records. Most women (24, 92.3%) reported having internet access and half reported having a smart phone (13, 50%) and/or laptop (14, 53.8%). Approximately one third reported having a tablet (10, 38.5%) and/or desktop (6, 23.1%) at home. More than half (15, 57.7%) reported they accessed information online per week, but one third of the Spanish group (6, 33.3%) reported rarely accessing online information. Although nearly all women had internet access and many possessed electronic devices, a paper copy for storing health records was preferred (21, 80.8%), followed by online portal (9, 34.6%) and portable electronic format (8, 30.8%).
Three common themes emerged from the focus group discussions: accessing health record information, communication barriers, and using health records to improve health literacy.
Accessing health record information. Twelve participants shared positive experiences with accessing their own health records. One woman reported, When he [the doctor] transferred me to the new doctor, he gave me both of my daughters' records with everything. He gave me the originals and copies.
Some women related challenging experiences in their attempts to access or obtain their health records. Two participants noted that they were not aware of their right to possess their own health records. One woman stated, I never thought about whether I have access to my records. Four participants reported that they were unable to obtain their health records. One woman stated, I have not gotten my own health records. Even when she asked to see [health records] she was told: Oh, you can't see it. Another woman recalled, I asked my doctor, but he told me that it was private... He doesn't do that for patients. He can only explain it to you but he can't give it to you. He has shown me my children's information on the computer.
Two mothers recalled that they encountered the difficulty with obtaining their health records when they transferred their care to another healthcare provider. One mother stated, He [the doctor] was so upset that I switched doctors; that's when my new doctor requested my records...but he denied the request. Participants identified significant access barriers causing negative experiences with health record use: they reported compromised relationships with their healthcare providers potentially linked to healthcare providers not complying with the HITECH Act and not having EHR available in the clinical settings.
Communication barriers. Participants identified significant communication-related barriers contributing to their negative experiences with health record use. The first communication barriers identified were the unfriendly patient portals and use of complicated medical jargon. Women agreed that a user-friendly EHR system was needed. One woman stated, They have a portal where I can access it, but it's not very user friendly. I find myself having to click here, click there. Even to register, it was a bit confusing because it asked for a birthday, so I was assuming since I'm a mom, it's asking for mine. So I couldn't log in. So I had to go in my next visit to ask, it was actually his [her son's] birthday.
Five participants reported they could not understand legal and medical terms covered in the health records and relevant documents. For example, the consent form that must be signed prior to obtaining medical care is written in legal term that is hard to discern. Although forms were available in Spanish, many women complained that use of technical terms continued to make it difficult for them to comprehend the information.
Another barrier identified was the women's dissatisfaction with communication between themselves and their healthcare provider(s). Twelve participants considered time constraints as an underlying reason for ineffective communication. One woman recalled, She [the doctor] is always in a rush. 'Ok, what is it? Ok. I have to go. I have another patient. She would just say one question and one answer today. Because [you have] another question, you have to come next visit to see me, and then I can answer you.
A consistent barrier discussed by women who only understood Spanish was pervasiveness of English-only language in the healthcare system. Despite legal and regulatory guidelines, women stated that interpreter services are still not readily available in all offices. One woman stated, The doctor is American, but she speaks a little Spanish. I bring my children with me so they can translate. And otherwise I'll ask one of the women there, I don't speak English. Please help me. But they don't give me an interpreter or anything.
Using health records to improve health literacy. All participants agreed that having regular access to their own or their family member's health records would make them more proactive about their health and increase their confidence in communicating with healthcare providers. One participant shared, With my OBGYN, having that portal, I would leave her voicemail messages, and actually e-mail. I would send her e-mails and she'd respond right away. Like, what does this mean? And that was as a result of the portal. Because I would see things that I normally would not have access to. In this way, participants linked access to health records with improved communication and thus, better relationships with their healthcare providers.
Women in our study identified five barriers in access and communication about health records. It appeared that when some providers had EHRs, they did not follow the HITECH Act that requires providers to offer patients timely electronic access to their health information (Jhamb et al., 2015). Without EHR in the clinical settings, we found a tendency for the patient to have a weaker relationship with healthcare providers. An unfriendly patient portal and complex medical jargon can reduce patient motivation to use health information obtained in health records, an observation also made in other studies (e.g., Britto et al., 2009 ; Dhanireddy et al., 2014 ; Hong, Ehlers, Gillis, Patrick, & Zhang, 2010 ; Zarcadoolas, Vaughon, Czaja, Levy, & Rockoff, 2013). Women shared a common experience of feeling rushed during medical appointments. Ineffective and rushed patient–provider communication may limit opportunities for women to discuss access to their health records, as well as using and keeping them. Spanish-speaking women shared their frustration attempting to communicate with an English-speaking provider and to understand information in their health records.
All participants agreed that accessing and using their own and/or family member's health records would be a valuable approach to empowering them to care for themselves and their family. Easy access to their health information would make them feel better prepared for their medical visits, assist them in monitoring their health condition closely, enhance their motivation to seek health information, and strengthen provider–patient communication. Our results are consistent with prior findings in which adequate use of health records in patients with chronic diseases was found to increase disease knowledge, enhance self-management behaviors, and improve patient–provider communication (Amante, Hogan, Pagoto, & English, 2014 ; Kruse, Argueta, Lopez, & Nair, 2015).
The level of access to technology we found in our study is similar to that of patients participating in a national survey which showed that 78% of Hispanics used the internet at least occasionally, 49% owned a smart phone, and 72% had either a desktop or a laptop (Lopez, Gonzalez-Barrera, & Patten, 2013). Our study identified a preference for paper records (80.8%) despite participants reporting internet access. A recent study reported that at two urban hospitals in New York City, 94% of predominately Hispanic postpartum women showed interest in accessing their EHRs through smart phones, but that study did not investigate patients' attitudes about health records storage (Fernandez, Copenhaver, Vawdrey, Kotchoubey, & Stockwell, 2017). Our results suggest paper-based health records are the preferred storage format for some underserved Hispanic women during pregnancy and postpartum. It is important to ask patients' preferences for keeping their records even with convenient EHRs. Further study is needed to examine the relationship between access to internet technology and options for using and/or keeping health record data among underserved women during pregnancy and postpartum.
Our study has limitations including a small, convenience sample of women from only one perinatal program in Orange County, CA. Participants may have been influenced by prenatal and/or postnatal health education programs provided by the program. We did not collect data about patient characteristics such as level of acculturation and basic computer or internet literacy. These factors may affect participants' perceived benefits and barriers to health records literacy (López et al., 2016 ; Vehawn et al., 2014).
This article examines women's perceptions of health record use during pregnancy and postpartum in a Hispanic community in the United States. Our results provide preliminary information to inform hospital and clinic health record policies, providers' attitudes, and patient's health knowledge. Prior studies found that patient–provider relationships and provider's perceptions of the usefulness of EHR are critical factors influencing patients' initial adoption of and continued use of EHRs (Irizarry, DeVito Dabbs, & Curran, 2015 ; Lyles et al., 2013). Crotty, Mostaghimi, and Landon (2013) developed and tested a curriculum for patient–doctor secure messaging using a web-based patient portal and found most resident physicians felt comfortable writing electronic messages to patients and perceived improvements in care after the curriculum was offered to them. Nurses play an essential role in communicating with women during pregnancy and postpartum and in connecting them with their healthcare team. To combat health disparities in underserved perinatal women, nurses should assess barriers to accessing and using health records. Our results suggest it is important for nurses to become involved in improving women's open access to health records and use of EHRs to enhance underserved patient's health literacy and relationship with their healthcare team.
The authors are very appreciative of the administrators and staff members of MOMS Orange County for assistance with study design and recruitment, particularly Yvette Bojorquez, Michele Silva, and Claudia Franco. The authors thank their research assistants for collecting data.
The project was supported by the University of California Irvine Multidisciplinary Design Program and Undergraduate Research Opportunities.
Suggested Clinical Implications
Accessing and understanding health records may increase health literacy and decrease health disparities in underserved perinatal women.
Improving hospital and clinic policies such as reinforcing the HITECH Act, connecting the EHR between hospitals and clinics, using a friendly patient portal, limiting medical jargon, and providing health literacy education may reduce barriers for underserved women's use of their health records during pregnancy and postpartum.
Healthcare providers should promote women's access to and use of health records to enhance patient–provider communication and build more trusting relationships.
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