Home Page > 5 Case- Narrative Analysis of MiVIA

Design Lesson Plan: Angela Chen

Introduction

The economics pressure of increasing healthcare costs and great healthcare outcome are driving the search of new approaches to health management. Currently, public policy is attaching importance to the role of consumers in managing their own health while partnership with healthcare providers. Personal Health Records systems are one of the tools to improve health care through consumer empowerment. There are quite a few Personal Health Records or health data exchange systems implemented in several cities or counties. My case analysis will focus on the electronic Personal Health Records on the vulnerable and underserved population-the migrant and seasonal winery worker in Sonoma, California.

The Health Resources Service Administration defines medically underserved populations as those with “economic barriers, or cultural and/or linguistic access barriers to primary medical care services.” The Advisory Commission on Consumer Protection and Quality in the Health Care Industry consider the vulnerable population are individual who are vulnerable to health care quality problems for one or more underlying reasons including financial circumstances, place of residence, health, age, functional status developmental status, ability to communicate effectively race, ethnicity, and gender (Chang et al, 2004). The migrant workers often find it difficult to access health care, and even when they are successful, the care they receive is sporadic and fragmented as they move form job to job and community to community. Due to this nature, migrant workers fall into the categories of vulnerable and underserved group; in addition, they are facing digital divide- has typically been used to describe decreased access to information technologies, particularly the Internet, for racial and ethnic minorities, persons with disabilities, rural populations, and those with low socioeconomic status.

Governmental agencies and cooperative partnership are taking steps to close the gap of access to health care information and communication. National, regional, state and medical center partnerships are evaluating the effects of information technology use on health and health care outcomes. In order to minimize the barriers that underserved populations continues to face in accessing or using of health information, the Informatics has been identified a critical role in designing a health system that produces care that is safe, effective, patient centered, timely, efficient, and equitable, as well as a strategy for reducing health disparities in underserved populations.

Background

MiVIA, which means “my way” in Spanish, is an electronic Personal Health Record designed for the migrant and seasonal workers in Sonoma, California. in 2002 under the collaboration of Vineyard Worker Services, Saint Joseph Health System-Sonoma Country, and Community Health Resource & Development Center. Migrant and seasonal farm workers suffer disproportionately from undiagnosed and/or unattended chronic medical conditions, poor health outcomes, and increased health costs (duplication of services or tests) for their transient lifestyles. As they move around the medical records, test results and care plans are usually left behind; thus created increased costs for an already overburdened healthcare system. MiVIA offers a solution while the purpose of it is to store and download health information and make that information available to multiple doctors and clinics. In sum, the goal of MiVIA is to prevent unneeded testing and repeat immunizations that delay treatment, crowd waiting rooms and waste taxpayers dollars.

In detail, a PHR makes it possible to store critical health information, such as diagnoses, medications, allergies, chronic conditions, treatment plans and test results- in an extremely compact, portable device that workers can easily take with them as they relocate. The information MiVIA typically stores includes the patient’s medical history, name of doctors and other care providers, and a record of immunizations, hospital visits and any serious conditions. MiVIA also provides the Service Wheel, which is an Internet portal that leads users to social services. At security side, MiVIA seeks the balance access and security considerations. Users, including patients, any health care providers, or advocates can download their information at any time, providing audit trails, secure messaging and provider entry portals. Each PHR is password protected, using 128 bit encryption, and is HIPAA compliant besides the audit trails and secure messaging. The MiVIA record is owned by the user or user’s legal representative while allowing user or user’s representative to authorize others to download their information at any time or to have the information downloaded by a healthcare provider. No one, including the government, can have access to the information without user’s authorization. Therefore, the fear that the information could be used to deport workers should not exist. Plus, federal laws prevent immigration officials from looking at medical health records or identification information.

There were 1, 092 MiVIA users since January 2005, with the word is spreading through the farmworker community that the service is safe, the number hit impressively to 41,773 at June 2005. The program proved popular as MiVIA service is getting serious interest from groups in the Napa Valley, the Central Valley, the Pacific Northwest and Texas.

Learning Objective

Our learning object is to understand how the narratives can be used to assess online health service.

With an increasing focus on developing a theoretical understanding of everyday life information behaviors, researchers need to consider the appropriateness of the methods and techniques utilized in empirical research in this area. The narrative and episodic interviewing techniques are qualitative research methods that sustain a person-centered paradigm of human information behavior and that provide a particularly useful methodological framework for studies of everyday life information-seeking behavior. According to Bates, narrative and episodic interviews are best suited to qualitative research and in-depth studies involving a relatively small number of study participants when interviews can be conducted in the interviewees own natural (everyday) environment and where the purpose of the study is to understand the research topic from the perspective of the study participants. Besides Bates’s study, there are similar studies predominantly emphasize the need to understand everyday information behavior from a person-centered perspective and also reflect a shift towards and increased use of qualitative research methods (Bates, 2003.) Since using MiVIA is considered as an everyday life information-seeking behavior, narrative approach would be one of the effective tools to assess MiVIA- an online health service.
First, according to Jovchelovitch and Bauer, narrative interview is described as a qualitative research method used to stimulate interviewees or study participants to express their experiences and view of the topic being studied through telling stories or narratives. It is believed that the perspective of the interviewee is best revealed in stories where the informant is using his or her own spontaneous language in the narration of events (Jovchelovitch and Bauer, 2000.) A narrative interview takes the form of a conversation and participants related their experiences, bringing in whatever they consider to be relevant. The technique of narrative interviewing stimulates storytelling and encourages interviewees to describe an event as they saw it, in their own language, using their own terms of reference, and emphasizing actions or participant which they regard as being significant. In addition, how study participants report and narrate episodes from their everyday life reflects the factors which influence their behavior. Because the interviewees will not be restrained by a specific form of answers but an open-end story he/her wants to talk about, it is believed that the use of a narrative approach in social inquiry can overcome barriers that can arise when collecting data from people from relatively disadvantaged backgrounds who may lack educational experience and language or literacy competencies (Bates, 2003.) Particularly, it is assumed that narrations preserve perspectives of the interviewees in a more genuine form. As a non-native English speaker, I totally agree with the notion that narrative interview would create a more relax-typed of conversation so that the interviewees who lack language or literacy competencies would be able to open up and disclose more details of his/her perspectives. Furthermore, storytelling provides researcher with an insight into how the study participants make sense of their everyday lives in relation to the overall research topic.

There are three ways to analyze the data collected through narrative interviews (Bates, 2003.):
•The sequential and temporal structure of narratives (to understand the linear sequencing of actions which comprise the story);
•The focus, or perspective (orientation) of the narrative (to understand the views and perceptions of the interviewee and how they evaluated the situation); and
•How the interviewee tells or reports the narratives or episodes, which includes their use of language, tone, etc.

The six common elements, according to Labov’s structural approach, which any fully formed narrative should contain, are as follows (Bates, 2003.) :
•An abstract (a summary of what the narrative is concerned with);
•Orientation (context-time, place, situation, participants);
•Complication action (sequence of events);
•Evaluation (perspective on the event/actions, attitude, significance of the even for narrator);
•Resolution (outcome);
•And coda (related the narrative even back to the present).

Analysis

In order to learn if the narratives can be used to assess online health service, a semi-structured interview will be conducted in terms of evaluating MiVIA including the aspects of usability, access, outreach, and training. Specifically, the narratives and analysis from the interview with Jessica Alcanter, the health promoter of MiVIA program, will be presented in the six sections as follows.

Abstract
The purpose of MiVIA is to use technology to improve health for migrant and seasonal workers. In order to evaluate the MiVIA program, Nathan and I went on a 2-day trip at Sonoma Valley to visit the MiVIA program users, administrators/staffs, physicians and nurses. During these two days, we visited both Mobile Dental and General clinics at Sonoma and Windsor, Vineyard Worker Service Center, and Mary Issak Center. However, in this analysis I will focus on the interview with Jessica Alcanter held at Springs Village Apartment recreation center on November 19, 2007.

Orientation
The interview with Jessica Alcanter, a health promoter of Saint Joseph Health System Mobile Health Clinic, was the very first interview we conducted for the MiVIA project. We arrived around 9 o’clock in the morning at Springs Village Apartment, a low-income housing, which was one of the sites for Sonoma mobile clinics. Jessica gave us a tour on the mobile dental clinic parked outside the apartment complex, as well as the apartment recreation center where the MiVIA administrative work is done. The recreation center is approximately 1000 square feet with one separate room served as a reception room. There is only one desktop computer used by the receptionist besides Jessica’s laptop on site. We were introduced to the dentist and several staffs. Jessica is serving as a MiVIA program coordinator today while at the second day she is a mobile clinic assistant (wearing scrub) at the Windsor mobile clinic site. We were hoping to talk with physician since we prepared a set of questions for them. However, they have a booked schedule and took emergency patients they have to squeeze in. Thus, we didn’t get to interview with the dentist.

Description
In order to explicitly present the intrinsic of MiVIA program, the sections of Description and Evaluation use the “narrations” extracted directly from our interview with Jessica. In the Description section, the narrations will be categorized into four entities as follows with the intention to understand MiVIA from various angles (Please see Appendix for complete Description and Evaluation).
Jessica Related
•I started to work about a year and half ago, and all I really do is working with MiVIA program and getting it out to the community. And I go around with both Mobile Health and Mobile dental registering clients into the program. I also do any types of presentations, to the community and the doctors’ meetings.
•So I started doing the training on how to use the computer and how to use the internet, as far as detail as that possible could, you know, how to turn it on. It has to be pretty detail.
•I go to different clinics to explain what is this (MiVIA program) that we have, in case patients come to them with MiVIA card, and you know, how are they gonna access the program and reach anybody to answer their questions about the program or about our patients.
•My job is specific using MiVIA or enrolling patients or keeping track of the records. I am pretty much they come to in case they need help with that.

Physician Related
•(Interviewer: when do physicians enter the information? Is that right at the time or the end of the day?) At the end of the day mostly or whenever they get a chance to.
•The physicians enter all the record at their offices or homes, and they have to take their personal time to do that.

Program Work Related
•(Interviewer: Someone wants to come in and use the clinics, how does the enrollment go? They (patients) get here early in the morning. I get an hour early before the mobile clinic gets there because as soon as the mobile clinic gets in there’s whole bunch of commotion and switching in and out of patients. And I’ll have my time with each patient individually so I can talk to them, explain to them about this great program that we offer to all of our patients. If we got someone who has already enrolled, we offer training for the day, you know either during their wait or we schedule another appointment. But for people who are just getting enrolled we sit down and show them how the program works, get all the information down, have them log in and give the user name and passwords and take pictures, either giving them the ID card on the spot or send it to them by mail. And by the time the mobile gets here, my whole thing is to get them enrolled so the doctors can access to that patient as the chart said he’s a MiVIA patient. (Interviewer: So the chart will say that?) Yah, hummhum
•(Interviewer: When the patient return, do physicians pull out the MiVIA record again or do they usually reference their notes first or they go in?) They have to reference their notes first as they don’t have laptops up there (at the mobile clinic), they don’t have room for it so they would have to check their charts, they would access the program as soon as their visit or at the end of the day because of the information they have to input, and because the patients already assume the information they (physicians) input on the day are out there.
•We are mobile clinic, and we don’t have a phone that they can access us and call us to get a medical chart. So it’s really good as it (MiVIA card) offering to people to keep in an emergency, they have their cards on them as they have all the immediate information, any medication they currently on, any allergy, any emergency contact, so immediate information you need to know.
•(Interviewer: We heard that MiVIA card is a big deal or something they really like to carry with them? Is that true? ) Yah, one of the favorite things is that ID card. Most of them don’t have formal IDs, and MiVIA card could be the only ID with photo and immediate information, and on the back it has the medical information. Yah, people come to enjoy it as it’s the one thing they use it the most.

Context Related
•There are more female users than male users.
•St. Joseph hospital is the only hospital has community service in the area.

Evaluation
•And we came to realize that the patients we were enrolling didn’t have education on the computer or the internet. So we start thinking maybe we need to go a little bit further, for the user actually to be able to use it.
•(Interview: From the doc’s point of view, is filling out patients’ information on MiVIA web a burden or are they all for it?) Yah, when we first started it was a burden, we have to write down the charts and we have to go ahead and input into the computer. You know it was not really having it until we started calling people and doing little survey, you know, asking “Are you using it? How often or how are you comfortable using it and etc?” And it was until I brought the numbers back to the physicians we are worked with and they were really surprised that how many people were actually using it.
•(Interviewer: Does using the personal health record system make people feel better? They feel more control of their health? Like they actively managing their health? You notice that?) You know what, it’s funny because before a lot of people don’t remember the whole name of the medication they are currently on. Now they know how to found out the medication maybe not to spell it, but at least know how to pronounce it. So they are definitely more active with their health. And I use it on my grandpa, she lives by herself and she is 75 years old and all of her family are down here and she is in Yucaipa, so I definitely got her enroll because we are all scared what she’s doing by herself, you know, does she have anybody to help her.
•(Interview: How long it takes for those who don’t know how to get on computer or use mouse to get on computer or comfortable to put information?) Usually, we do training whenever they have time, I would say anywhere about 7 visits to where I don’t have to say anything at all. It’s pretty intense pretty long, it’s about 2 hour training, and sometimes I would spend the whole morning with them. (11:30)And they pretty enjoy using email, it’s cheaper than calling Mexico (laughing). So, it’s really cute because they will bring camera so they can send pictures, they really enjoy emails. This is actually one of their first email accounts.

Challenge/Recommendation

Based on the interview, the followings are two main challenges of MiVIA program.
1.It is hard to promote the MiVIA program to the clinics or physician. Physicians wish to see numbers of enrollment of MiVIA before adopting MiVIA. In addition, physicians need to spend extra time to enter patients’ health diagnosis to MiVIA.

2.Lacking of funds, computer equipment and human resources to support the program. Using quotes from Jessica, “The only other issue will be having the computer. You know we deal with the less-fortunate population and they just don’t have money to have their computer at home like anybody else. So you know the access to it, either public library or anywhere like VWS (Vineyard Worker Service) where has little computer lab for whatever need they have,” and “the computer training takes anywhere about seven visits to where I don’t have to say anything at all, and it’s pretty intense pretty long,” I believe time and resources for training on using MiVIA program are the biggest obstacle from her side.

There followings are findings/ recommendations to the MiVIA program.

•Jessica, seems to me, is a critical bridge in terms of training and promoting between the MiVIA program and the patient. The MiVIA program is hard to prevail among the underserved populations without the role of Jessica. Without technical computer knowledge, the underserved population will not know how to get on to computer, not even to mention understanding the benefits of MiVIA. Without Jessica, there’ll be a technological gap for the MiVIA users. Jessica’s has been multi-tasking in the roles of health promoter/outreach coordinator, mobile clinic assistant, and computer trainer. Therefore, it is essential to recruit more staffs to serve Jessica’s multiple roles to make MiVIA program more effective.

•The number of enrollment of the MiVIA program is a decisive factor for the physicians/clinics to adopt MiVIA program. Showing good numbers worth more than a thousand words. Thus, it is recommended that a comprehensive statistics/survey of MiVIA usage be conducted to serve this purpose. Further, providing physicians statistical benefits of adopting MiVIA, such as improving accuracy of information across the continuum of care, saving redundant paperwork, shortening the wait for obtaining patient’s lab result and etc, to physician/clinics will certainly increase physicians’ interest.

•In order to avoid double work and increase efficiency (physicians enter patients information in their spare time), it is recommended to provide an on-site laptop for physicians to enter patients’ health information while diagnosis.

•Even though MiVIA staffs emphasized on the confidentiality of the personal information to comply with HIPPA regulation, users are still not confident on the confidentiality. It is critical to gain the trust from users. Besides continued education, to overcome the obstacles of users’ unwillingness to disclose specific personal information on the MiVIA system, the required information may be redesigned. Jessica mentioned, “The information we input, a lot of people are uncomfortable with letting us know where they were born because of the whole immigration issue. They don’t want that to be a question,” hence, some required information may be redesigned or removed according to patients’ concerns to minimize the hesitation and increase the enrollment.

•Outreach/marketing plays a significant role for the success of MiVIA program. The followings are various sales pitches can be used to promote the program.

1.Saint Joseph hospital is the only hospital offering community service as well as a catholic organization, MiVIA program should utilize the “brand identity and trust” to promote the program.

2.The mobile clinic is mobile without a phone number and therefore is hard to reach for medical/health information if emergency happens. For that reason, MiVIA online record, as an alternative, will be an easy and convenient access for the mobile clinic patients to obtain their health information anytime.

3.Enforce the alliance with institutes that migrant workers use or contact frequently, such as Vineyard Worker Service or other social institutes. Based on the current established relationship with migrant workers, those institutes will be the credible and trustful resources to effectively recommend or promote MiVIA to the workers.

4.Not only apply to the migrant workers, MiVIA program is also suitable for the live-alone elders. Families of the elders are able to monitor and access the health record of the elders’ while they are hundred miles away. Consequently, elders could be another target market for the MiVIA program.

5.Point 5 and 6 are based on the “customer perceived value” from marketing perspective. MiVIA card turns out surprisely to be a big hit by serving as an ID card due to most of the migrant workers can not obtain formal ID cards for their illegal immigrant status. Follow this logic, MiVIA program will be prevailing if MiVIA card or online health record system is designed to suit users’ extra needs. For instance, according to the cases told by VWS workers, the migrant workers are mostly young, single male. A lot of them have sexual transmitted disease issue that they are unwilling to share or disclose with. Therefore, if MiVIA online system supports a medical search function for the non-disclosable diseases in Spanish version as a side benefit besides storing personal health record, the potential clients may be increased as they perceive more values from the system.

6.Potential users will adopt the product or program depends how much values they perceive from them. According to Jessica, one of the values users perceive from MiVIA program is they learn how to use computer and obtain more computer/technological knowledge. With the basic computer training, users can now send their pictures to their families at Mexico as well as calling them through Internet as an added value. Thus, it is recommended to increase the perceived value of the MiVIA program or other added values to users. The MiVIA program has to be user-driven.

Coda and reflection

Through the narrative interviews with a story telling approach, I indeed can immerse myself in the context by picturing the story. In order to explore how the central topic fits into the interviewee’s everyday life, Flick suggests that the interviewee being asked to recount a day with reference to the issue (Flick, 2000). While Jessica was asked what her typical day is alike when she is with the mobile clinic, she described how she outreached and enrolled the patients as telling her everyday story. From that, I thoroughly agree that story telling approach gives me a deeper understanding of interviewee’s perspectives. For instance, she would be able to open up and disclose more details about how she has to train the patients to use computer from scratch to the point they can use MiVIA program without her help. Without narrative interview, I would not know what difficulties she needs to go through and how much effort she needs to put on the training session. Those details definitely will not be presented or disclosed in the context of true/false or Likert-scale survey. Furthermore, from her narratives I strongly sensed how much she loves her job and enjoys helping MiVIA patients. From this narrative “there are always little story…..I go to the store and I bump into five people that I know. I work around the Sonoma country so I am just so well-known by everybody (with a pleasant tone),” it is no doubt that Jessica is proud of her job. I believe her enthusiasm is an inevitable factor for the MiVIA outreach or enrollment to be successful. Again, this is an additional finding that I may not be able to obtain from other research method.

When carrying out the analysis of data from narrative interview, I use Labov’s structural approach with some modifications to identify the story components and select illustrative quotes which highlight any significant parts of the narratives. Using this structure enable me to observe the MiVIA program at complete angles. Also, among Bates’s three ways to analyze the data, I chose “perspective/orientation of narratives” by focusing on Jessica’s narrative to understand her view and perceptions and how she evaluated the MiVIA program. As we ask Jessica “how the users feel about the MiVIA?” she described how the MiVIA ID card became a big hit as well as how the users feel excited about seeing their pictures on the card because the illegal immigrants never had a chance to obtain one formal ID. Flick advises that the interview guide should be sufficiently flexible to accommodate any new aspects that may emerge from the interviewee. In that nature, Jessica further shared her grandma’s story with MiVIA and that story gave me the insight that MiVIA program should not only be promoted to the migrant workers but other populations. Further, with the flexibility of storytelling I obtained the valuable stories of STD issues among young male workers. I would not be able to obtain those without physically going into the field and having conversations with VWS workers. Various stories led me to a deeper, thorough understanding of the mindset of the MiVIA users. Those insights are derived from the richer data- narrative interview, as they allow me to assess the MiVIA program comprehensively.

While governmental agencies, medical centers or health organizations are taking steps to empower citizen to access the health care information and communication and evaluating the effects of information technology used on health, this MiVIA program could be a pilot project to assess the electronic health system used by underserved populations.

Lastly, I am thankful for the opportunity granted by Professor Tom Horan for letting me go to the field to observe and understand various perspectives from MiVIA users. I indeed get more sense on electronic personal health record, to the point that I plan to have my own one. After all, how could I get into personal health record field without experiencing in it?

Evaluation and Extension

In order to ensure we achieve our learning object, we need to understand the two entities in the learning object first, Narratives and Online health service-MiVIA program. As the reader reads through the learning objective section where I addressed the concepts and techniques of narratives, and analysis section where I included the context of MiVIA program through the perception of MiVIA program promoter, one should be able to answer the following questions.
1.What are the two toughest challenges of Jessica’s job?
2.What the values/benefit of the MiVIA program perceived from the users?
3.Please describe what the training session is alike?
4.List few sales pitches for promoting MiVIA program.
5.Narrative interview is particular useful for what kind of study and why?

With all the questions correctly answered, the reader should obtain certain level of understanding on how the narratives can be used to assess MiVIA program. For those who wish to have further study on electronic personal health can work on the issue “a personal health record or a personal health system-a system to facilitate communication on personal health?”

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