Introduction
As the US healthcare system becomes further impacted by factors such as the oncoming flood of baby boomers, increases in the amount of people uninsured or underinsured, higher occurrences of chronic illnesses (diabetes, hypertension, etc.), and an insufficient pool of incoming healthcare workers, the burden of managing one's own health, therapy, and medical transactions will increasingly fall on the patient and their family. As new systems for personal health management are developed it is critical then that these systems are responsive to the unique and specific needs of underserved populations.
Designing systems that meet the needs of the most disadvantaged users can help to insure wider adoption of that system by providing functionality and resources accessible to the most challenged of users. By conducting interviews with current users, care managers and administrators of personal health record systems a framework for best practices can be created to assist providers and developers as they look to adopt and develop these resources.
The MiVIA Personal Health Information System
Migrant families within the United States are a unique and historically misunderstood population of people. As their name would indicate, migrant workers move continually with the seasons of crops, as they are grown. Migrants straddle a line between the status of documented workers of the U.S. and illegal-aliens. Although they tend to the majority of U.S. agricultural needs, their status as citizens often raises questions regarding their rights to receive education and healthcare. Many complicated issues often surround the lives of migrant families: poverty, low-education, health, housing, language barriers and immigration status.
MiVIA is a web-based personal health record that allows migrant farm workers to update and keep track of their health information. MiVIA provides an opportunity to provide these people with the ability to create a continuous record of their health needs. Each worker's PHR is password protected and is HIPAA compliant providing audit trails, secure messaging and provider entry portals. MiVIA allows patients, or any advocate whom they authorize, to download their information at any time or to have the information downloaded by a health care provider.
The MiVIA program is a customized personal health record application designed within an underlying framework called FollowMe. The FollowMe platform is developed by Access Strategies, Inc., a privately held health information technology firm focused on web-based IT strategies for the healthcare industry. The ability to hold the health information of migrant farm workers in a centralized place through which they can access it no matter where they move is very important to this highly transient and often undocumented population. Of equal importance is the ability to keep track of any medical interactions that might occur throughout several different clinics in several different counties. Many of these field workers do not have medical insurance and so in most cases whenever they go to a clinic doctors often have to start over again and again toward understanding and deciphering the health history of these patients. Not only is this a burden on the provider, but it can also have an impact on one's health (ex. conflicting prescriptions).
Research to support adoption and implementation of systems such as MiVIA has identified that access to health information resources and support can have a positive impact on the health of underserved patients (Chang et al., 2004). Functionality findings have reported that these populations are concerned with their privacy, they want to decide who will access their health information and that all would want it to be portable in some manner of a smart card (Moreno 2007). It would appear that this community has distinct perceptions and insight toward the use of PHRs and yet research literature often focuses on categories common to issues of accessibility (technology and healthcare), usability (including literacy), and education and outreach (Brodie et al., 2000; Martin, 2006; Tang, 2006). There have also been findings that discuss how access to e-health services and resources is further exacerbating digital divide issues across racial and ethnic groups and in relation to socio-economic status (Hsu 2005).
The developers of MiVIA hope that this program can assist in at least providing migrant farm workers with a continuous record of their health information that can be easily accessed from any location. In order to better find out how migrant farm workers are using these systems and how best to address their needs a research project is currently being conducted within this population and is being analyzed to discover overarching issues, insights and experiences from the field that can assist toward future developments and implementations of health information systems within underserved communities.
Case Study Overview
Aguirre International (2006)conducted an evaluation of the MiVIA Program as it began to rollout services into Napa County, California. This evaluation provided an overview of system needs and implementation considerations for the MiVIA program as it continues to expand. Findings from this report indicated that components essential to adoption of the MiVIA program include a strong provider support base, effective outreach efforts and farm worker education opportunities.
Building off of these findings the focus of this report is to understand how qualitative research methods can be used to analyze and assess online health services. Specifically, investigation of the MiVIA program as it is being used within St Joseph Health System and Vineyard Worker Services of Sonoma County will be undertaken in order to better understand the perceptions and experiences of healthcare administrators and care managers who work with migrant farm workers and their families. It is becoming obvious through research and general implementation findings that a better understanding of the unique needs within underserved populations is necessary to effectively utilize personal health information systems within these communities. Furthermore, it is within the details of these unique experiences that the greatest need for research resides. For it is that element, the inimitable difficulties that cannot be easily overcome by these communities, that greatly needs consideration.
Through the use of qualitative research methods such as interviews and focus groups, greater detail can be derived from the experiences of people who work with these systems and within these communities. The study from which this report is derived from investigates three different cases in which PHRs are being implemented or considered for use within the community clinic environment. The first case, the MiVIA program, covers portions of the study discussed within this report. The MiVIA case study most importantly seeks perceptions of patients with experience in working with the MiVIA PHR in hopes of discovering constructs indicative of accessibility, usability and health outcomes. This study is also interested in realizing the experiences of healthcare staff that are promoting and using MiVIA as well. It is this specific aspect, perceptions of community-based healthcare staff and outreach workers that this report focuses on. It is recognized that healthcare is not an isolated experience and that people who use personal health information systems will often be doing so in communication with family members, care managers and physicians.
This report will outline preliminary findings from an interview conducted with the director of St. Joseph Health System for Sonoma County, the director of Vineyard Worker Services and a MiVIA outreach worker. Concepts to be discussed within the interview include aspects of adoption, implementation, usability, access, motivation, and health outcomes. Responses from the interview will be reviewed and coded so that themes or commonalities that surface through the discussion can be identified.
MiVIA Study Setting
These first sets of interviews were conducted during a two-day trip to Sonoma County where the MiVIA program is being implemented. Sonoma County is located a few miles above San Francisco and is most commonly known as a popular wine growing region. Sonoma is highly rural and consists of acres of vineyards used to grow the grapes for wine. Consequently, farm workers are employed throughout the year in order to assist in the growing, harvesting and fermenting of grapes. While this keeps many farm workers employed on a continual basis there are off season times in which farm workers most migrate within and outside of the county in order to find further work.
Two main sites were visited during this two day visit including a community center used as a mobile clinic site for St. Joseph Health System and an outreach center run by the Vineyard Workers Association. The mobile clinic site utilizes an “RV” in order to provide dental services on some days and health services on others. Staffing at these sites usually includes one to two primary physicians, nursing staff and a MiVIA outreach worker. It is the responsibility of the outreach worker to enroll patients into the MiVIA program and assist the physicians in populating the patient’s PHR with updates to their healthcare. The role of the outreach worker is crucial to patient and physician adoption of the MiVIA application. In discussions with the outreach worker it was identified that she often assists and trains patients in tasks which include learning how to use a computer, learning how to navigate the Internet and understanding how to log in and use the MiVIA PHR.
The Vineyard Workers Association (VWA) consists of an office in downtown Sonoma that is used as a drop-in site for migrant farm workers. Case managers there assist workers in a variety of social service tasks including the filling out of general paperwork, finding jobs, finding housing, dealing with social issues and accessing healthcare. Currently located at the VWA is one computer that can be used to train farm workers on computer basics and to enroll and train them in use of the MiVIA PHR. Significantly, VWA received a grant from the California Endowment in 2006 to enroll five hundred workers in the MiVIA program. VWA were able to fulfill their enrollment quota and are now seeking opportunities for continued use and adoption.
Study Design: The Use of Qualitative Research Methods
The use of data collection methods such as observation, interviews and extant documentation can provide extensive data collection opportunities (Creswell, 1998). Use of these types of methods within this research is appropriate since the purpose of this research is to explore and examine general impressions and experiences. An understanding of the perceptions and experiences of healthcare and outreach workers in use of the MiVIA application will be derived from a semi-structured interview conducted with four participants. Participants included the director and an outreach worker of the St. Joseph Health System and an administrator and case worker of the Vineyard Workers Association all of which who are using the MiVIA application within the community health environment. Neuman (2003) advocates the use of such methods when assessing unique populations that may be otherwise difficult to reach.
The use of qualitative research techniques can produce valuable and insightful results that are sometimes unavailable from fixed research methods. Use of qualitative research methods does not mean that the research is non-structured or that you are unable to produce empirical findings that can be generalizable. Yin (1989) stated that general applicability results from the set of methodological qualities of the case, and the rigor with which the case is constructed. In an effort to rigorously analyze interview data this study will use Atlas ti 5.0, the qualitative data analysis software in order to code the interview data received. Atlas ti is a well known tool for the analysis of large sets of textual, graphical, audio and video data and provides a systematic approach to analyzing qualitative data. Coding will be used in order to note when identified concepts (e.g. usability) and unrealized themes within discussions and interviews are encountered.
For example, if during the interviews each of the participants describe in their own way how difficult it is to get to a computer (for some they have to go to the library, for others they have to wait until the mobile van arrives, for others they can't access it at all) then a possible code that could be applied to this would be "difficulty accessing computers" or "access issues". Each time a similar response came up in other participant's interviews we would again code that element. It is possible that this code would come up in several different questions. If we find that throughout the interview this code comes up more frequently than other coded elements then we might surmise that "access to technology" is one of the leading disruptions as to effective use of the MiVIA system. With that knowledge we can make recommendations for system improvements.
Alternatively, we might find many users making comments as to how using MiVIA has allowed them to assist patients in tracking some important element of their children's health (e.g. helps keep track of immunizations, helps manage eye doctor appointments, reminds us of the last flu shot given). These types of comments we might code as "key features" which would provide us clues as to the overall utility of the MiVIA system or suggestions for components that should be included in all PHR systems used within vulnerable populations.
Interview Analysis and Findings
Analysis
The discussion between community clinic and social service administrators, outreach workers, and research staff spanned a time period of approximately forty-five minutes and was conducted using a semi-structured interview schedule that included questions about general experiences and perceptions in use of the MiVIA application (Appendix A). The full interview was recorded and from this recording a transcript of the discussion was created (Appendix B). This discussion included approximately ninety-seven different communication exchanges between participants. This transcript was imported into Atlas ti for coding and general analysis. A limitation of this initial analysis reporting is that it involves only one interview set. Eventually, Atlas ti will house several primary documents made up of different interviews or pieces of data that can then be used for deeper analysis and defining of correlations between interviews and pertinent themes. A further limitation of this initial analysis is that a demo version was used and therefore only one hundred coded quotations could be stored, however over one hundred- fifty coding associations were identified. It is more than likely that once a full version of Atlas ti is obtained those findings will change or be further supported.
Coding consisted of identifying concepts or terms unique to the research context that arose naturally or through the prompted questions asked of the participants. For example, within the study being analyzed for MiVIA one of the constructs we were interested in identifying was motivation for use of personal health information systems. So as the transcriptions were read through, anytime a quote or phrase implicated some level of motivation this section was tagged with the code "motivation". Many elements were tagged with more than one code depending upon how many different relevant concepts were used within the quotation.
Preliminary Findings
One of the main goals of this study is to determine implementation and adoption issues experienced with the community health setting when using personal health information systems such as the MiVIA program. One way in which this was done was by identifying which coded variables arise within the conversation most often. Chart 1.0 provides a description of the number of times particular codes were found throughout the discussion between directors and outreach workers. Although some concepts were likely triggered from questions asked of participants, the frequency for which they occurred is still indicative of the importance of those concepts as it relates to use of PHRs within vulnerable populations.
From a quick look of these findings we can identify that aspects of education, empowerment, outreach, infrastructure challenges, and the use of health I.D. cards were a frequent part of people's experiences and perceptions. Each of these concepts was found often throughout the discussion and indicate an important aspect of MiVIA use within these communities. Further issues of importance include data accuracy, health record storage, integration issues and staffing challenges.
Chart 1.0 – Frequency of Key Coded Comments
The concept of education, found upwards of seven times, often was referring to training needs in use of the MiVIA program. Expressed often was the idea that you cannot simply hand this community a PHR and think that they will begin managing their health. The only way for it to be effectively used within this group is through continuous trainings and education. This includes trainings about how to use a computer, use the Internet, and how to understand health information. A few examples of these quotes include:
· “When we started doing MiVIA we discovered that there is no point registering people if they had no education on the program. There was just no use for it. So I started doing training for everybody on how to use the computer, how to use the internet, and how to use the MiVIA program in general.”
· “Because just having a card is not enough. There is a lot of information to learn if you don’t have computer skills and we do want them to maximize the use of this tool to their benefit and their families benefit. So it does take continued interactions with them. [To Kenny] And I would think that at VWS you tend to follow up with the people after you have given them the card, hold classes…”
Another big issue in use of the MiVIA program with migrants was aspects of empowerment and often tied directly to that was the concept of the health ID card. Although the unintended importance of the health ID card had been related informally, it became obvious from this discussion just how big of an impact the introduction of this card had within the farm worker community. On further reflection this makes sense in that these people primarily consist of undocumented workers (even ones that have been living in the U.S. for up to ten years and more) and consequently obtaining valid identification is very difficult and a great burden. By providing a health id card that includes a picture and physician validated information the MiVIA program significantly empowers farm workers in their ability to legitimately identify themselves. Obviously, of equal importance is the fact that the MiVIA I.D. allows migrants to provide doctors with up to date health information including allergies, prescriptions, and chronic illnesses. These can be hard things to remember for anyone without the added difficulty of being from a population with highly fragmented healthcare. Below are a couple of the comments made in this regard.
· “The main motivator is that they get an id card. It says no id card on the bottom of it, but they use it as an id card. So that is one of the main motivators, because you are talking about people who either have a license or they don’t. If they don’t have a license then it is possible that they don’t have any form of ID, but they can go to the library and they can even go to some banks here with a utility bill and an ID and open an account. So that is a great motivator to be able to use it.”
· “…not only that but even walking down the street and worrying about getting stopped by the police or somebody they are at least able to show that they are a part of Vineyard Worker Services and have recorded health information. Not only that, but without getting into liability issues it provides basic forms of information of what they are allergic to or medications.”
Another potentially interesting element to consider when comparing concepts used three to four times versus those used five or more times is the possible implication of the overarching domains that each of those sets might belong and how that relates to community-based organizations and their underlying priorities. Other than infrastructure challenges the top elements discussed by directors and outreach workers all had to do with how MiVIA affected the individual. In other words the discussion centered on how MiVIA best supported the needs of the patient. While the primary focus of the study is on how PHRs affect patients, the questions asked of providers were in regards to adoption and implementation factors within the community clinic setting. Even the concept of infrastructure challenges is often related to the needs of patients:
“We are going to get a couple of computers, two Dells, so people can access anything they want in terms of their health records, health information, and we’ll have tutorials on there.”
When we start to look at the second set of concepts, those used three to four times we then seem to find concepts more focused on the needs of the overall clinical system (e.g. data accuracy, staffing issues, integration challenges, etc.). Outside of any indication as to the unconscious goodwill of community health workers it is possible that this suggests that personal health system success is truly reliant on successful adoption by the patient.
Conclusion
Preliminary findings indicate the need for patient-centered approaches to personal health information system design and development within vulnerable populations. Importantly, it is through inquiry of healthcare staff that these results are found. It would be expected that a patient’s perspective of personal health systems would center on their specific needs and yet is instructive when administrators of these systems identify the need for patient empowerment as well. Interview data relates that issues of education, empowerment, identification, staffing and integration are all pertinent components to successful implementation within underserved populations. Perhaps most significantly is that these results and the insightful comments elicited from the interviews conducted would not have been realized if not for the use of qualitative research methods. Facets such as the importance of health I.D. cards or the specific tasks that need to be conducted as a MiVIA outreach worker do not come forth within quantitative techniques. It is through the descriptions and personal experiences of users that make possible the ability to identify the unique elements that describe a successful system.
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