I’m Trying to Find my Way of Staying Organized: the Socio-Technical Assemblages of Personal Health Information Management

The practices that emerged from my analysis concern the planning of using information, the ability to access information in how it is stored and organized, and the sense making practices of information. The immediate availability, how easily a patient can locate information, is an important practice that in part constitutes a personal health information management assemblage. Overall time to access the information is not the only factor; precise location and methodology or process to obtain the information are also relevant. This practice was also influenced a great deal by the patient’s overall health condition: mental and acute health concerns mandate that health information be accessible depending on a specific health situation or impairment. This practice manifests through actions such as pinning the Veterans Crisis website to the patients’ mobile phones home screen where it can be quickly accessed at a moment’s notice. The participant who did this would access those resources to practice the therapeutic techniques listed on the website as a guide. Another example of requiring close proximity to information is having the mental health support hotline phone numbers on speed dial or pinning other websites that contain information. Another event that occurred during the interviews and observations involved the use of the PHR and access during an emergency.

‘I was referred to the emergency room a few weeks ago by my primary care [provider] and he didn’t give me a lot of information, they just told me to go and the VA was closed so I had to go to a civilian emergency room and answer some questions, and I logged into My HealtheVet on my phone and showed them the prescription that I have that they wanted me to get’ (Patient #9243).

This example is of an emergency in which the patient needed to quickly provide medication information without recall of the details. However, the patient accessed that information via the PHR on the phone. Because of the patient’s organization strategy and personalized information resources they were able to provide information that otherwise would have been inaccessible. Not having the ability to provide this information could be dangerous in certain circumstances, especially when medications are involved.

The practice of the accessibility and availability of information also plays out with information that has a physical materiality. Physical information, such as questions hand written on pieced of paper or a bound notebook, or websites printed on paper, can be moved closer to or further away from the person that needs it. Cases from fieldwork include storing pieces of paper in one participant’s wallet, between the pages of a book to read in the waiting room and bundling paper documents together in a folder and keeping it in a secure and secret location in the house. Space and location are not only an organizational concept or way to manage and organize information (e.g. Piras and Zanutto 2010), but a concept of criticality of information, of the need of the information, and the importance of the information in a context directly connected to the patients current health status.

Another example that emerged in multiple interviews: of the participants that store their health information in a digital format, they would use email as a strategy to save specific information that they needed to keep close access to because email was ubiquitous. All the VA medical centers and community centers that participants attend provide the ability to access email through a public computer, and most all participants had phones that also provide access to their email account. Saving health information to an email folder allowed these participants quick access to documents because their email could be recalled with a single tap. Digital information that was considered further away in a patient’s organizational practice is when patients archive the information on backup hard drives, requiring one – and in some cases two – passwords along with knowing a process to restore the needed information onto the desktop computer.

Information accessibility and making sure the information is available is important not just for the patient, but for caretakers, spouses, and other family members in the household. Nearly every participant’s case had the occurrence of a packet of important information for the patient’s spouse or caretaker. This information packet was referred to as an “emergency folder” in almost every case, also known by the more colorful title of “in case the world ends” folder by one patient and spouse. The purpose of this folder was to aggregate different kinds of printed documents, brochures, social security numbers, utility bills, passwords, and other types of health information the spouse or caretaker would need in case the patient dies or becomes incapacitated. These folders were spatially located in a common space both patients and caretakers were familiar with, often located closer to the caretaker or family members belongings in the home. This emergency folder exemplifies the role of space, availability, and accessibility of different information and different materialities to different social actors.

So far, findings have shown that personal health information management assemblages comprise a set of practices that concern the accessibility and availability of information. Now, I will show another set of practices uncovered by the analysis that concern practices of planning for the organization and use of health information. This includes the blue prints, plans, formulations, and other ways that patients learn to interact with health information. These practices then connect directly to the next section that reveals the practice of sense making in the constitution of this assemblage.

Participants’ prior knowledge and experience with managing personal information, broadly speaking, was used as a template that was then directly applied to their use of health information. This prior knowledge was how all participants negotiated the planning and use of health information. Participants applied their understandings, strategies, and techniques from the ways they managed information in other parts of their lives, non-health information they manage in other contexts of life, to health information.

In the interviews, I learned that the participants have a variety of hobbies including cooking from recipes, sewing and working with patterns, writing music and looking up music notation, researching ice fishing, and researching golf. When talking about their personal health information management work and how these patients use a personal health record, it was impossible to separate out how they use information in other domains to inform how they work with health information. These personal hobbies all involve the collection, organization, management, and use of information. Participants learned from their hobbies how to bookmark online resources or develop organizational systems that supported their hobby and allowed them to increase skills. When participants articulated their strategies for health information management, they often started by discussing one of their hobbies as a blueprint or map for integrating their health information into their lives.

‘But you know, when you’re looking at your computer up here, they have the star, I learned if I hit that it keeps a list of what I want, so learned how to do that. I save recipes, I save because I sew a lot, I save patterns, I save sites that I wouldn’t know in a million years to get back to that site. I wouldn’t know how to do it, so I learned how to bookmark it’ (Patient #2251).

This patient was referring to the favorites menu on their Internet browser. Rather than printing out the information from the Internet as the patient previously had done, now the patient keeps those materials organized in a favorite bookmarks folder. This was learned to maintain their sewing hobby. The above quote was the preamble to further discussing how they keep health information for a specific disease they had been researching for several months. This new information organization management skill was learned in the context of a personal hobby of sewing, then applied to the organization and management of health information.

The above example shows a general script or plan that is then customized and applied to a specific context. This example is contrasted with another patient that, instead of storing web pages as links in the bookmarks bar, opted to save the web page as a PDF file and then store that file in a hierarchy of folders on their laptop hard drive. This organization and storage strategy were directly influenced by how they learned to store and organize documents in their business life. Many information management skills are learned and adapted from other areas of life, because no one teaches a course on how to be a patient. These prior information scripts and models are learned in other contexts of life and become integrated into a patient’s personal health information management assemblage.

While the use of email to store digital documents was a clear practice many participants engaged with to increase the accessibility and availability of certain information, as previously shown, the use of email also became an organizing and planning practice in itself. This practice is explained by one participant thusly:

‘And I’ll email it to myself normally. And then move it to the folder and it stays there. I have email folders and those reference things and I have sixteen subfolders in my google mail and yeah. It doesn’t matter if it’s an e-receipt from Kmart or something from here [the VA] it gets moved to an email folder that I can go to and find the information quickly’ (Patient #8574).

Clearly, the patient learned this strategy from organization of other important digital documents. Rather than print them out or keep a file folder of many paper documents as others would, the patient used email as a filing system. This included sending PDF documents that originated in the PHR to the patient’s own email address. In the multiple cases when email was an organizing strategy for filing electronic documents, the PHR functioned as a system that simply provided information to the patient. Even though the PHR had similar document organizing and management capabilities, this practice of staring documents in email was preferred.

The final set of practices that in part constitute the priming of the patient’s personal assemblage are the ways in which sense making practices occur. These are the practices that patients employ to make decisions and use information in a way that meets their end goals. It is a similar notion to what Suchman refers to as plans and situated actions (Suchman 1985). While the patient has access to their own knowledge and lived experience, the patient also has the material tools, technologies, and documents where information is stored. These practices help patients make sense of information, answer questions they are asking, and also link to the second catalyst: actuating the assemblage through and with these practices. Sense making occurs through the various techniques, actions, or decisions that patients engage in with their personal health information. These actions are informed by the aforementioned planning and organizing practices. The practice of sense making is idiosyncratic and is cultivated through searching, organizing, and interacting with information. An example that occurred with every participant is the use of Google search. One participant narrated their own sense making process in the following way:

‘I generally just google. I look for a variety of places some of the big names the Mayo Clinic the Cleveland Clinic those are, or WebMD, what you can get. What I do is I’m looking for patterns, I look for consistency. So, if I search through ten different websites for information on so and so and I’m getting the same basic thing in all of them I realize okay that’s pretty much the standard. And if I find information that’s all over the place I realize okay there’s not a lot of consensus on it. So, I’m looking for consistency’ (Patient #2221).

What patient #2221 is showing is how they navigate search and make sense of their results, and the kind of templates, scripts, or models they use to help make sense of the information. This particular patient was medically trained and educated, and that education clearly influences how they evaluate and make sense of health information. The sense making practice used here is expressed as identification of patterns or consistency across similar websites. This practice was developed by this participant and it is reliant on other practices of their health information management assemblage. Other participants have developed different practices for a similar web search. But because those other participants do not have a medical education, the same personal experience, or the same searching and information organization practices as participant #2221 featured here, their sense making practices will differ. This is why personal health information management assemblages are personal and purposeful to patients. Patients are agentic actors engaged in an enterprise of personalizing, searching, organizing, managing, communicating, and working with health information mediated by social actors, technologies, and tools with a variety of materialities.

Other sense making practices include keeping notes and writing important questions on an index card that was always in a patients front shirt pocket, having a specific folder hierarchy and tags used in an email program to organize health documents, specific ordering and placement of medications in a cardboard box, using Google Docs to organize and share specific information with other people, using manila folders to organize prior military service health records that only exist in a paper format, internet search strategies, wall calendars to organize paper information, and dozens more practices are all sense making techniques that patients are their caretakers have developed.

A patient’s current health condition and previous experiences with health overwhelmingly influence how a patient is able to make sense of information and engage with many other aforementioned practices. One participant expressed this concept directly and concisely when discussing a chronic condition she has been dealing with for over 5 years that, at the time, was undiagnosed. When asked about how she retains information and questions for a clinical appointment, she replied: “If I feel bad I try to remember, if I know that I’ve got an attention span of a gnat I bring a printout with me there and I ask the doctor” (Patient #2251). The conversation that surrounded this quote was about the depletion of focus and health that occurred on an almost daily basis when the undiagnosed condition was at its worst. This permeated all aspects of his life and was especially insurmountable in attempts to research information online or sort through information on My HealtheVet when preparing for the next clinical appointment with a specialist. This conversation with Patient #2251, as well as similar conversations with many others, indicates that the way we manage health information and can make sense of it is primarily influenced by our state of health in the moment and by prior experiences. If the patient does not have the mental capacity to engage with information, the help of other people or alternate systems is required. In the case of Patient #2251 the convenience of paper and the ability to print information from the PHR was key to direct the conversation in clinical appointments because this patient used the paper as a conversational tool. They could hold it and point to it, write notes on it, or hand the paper to the provider and ask them to write notes (the name of a drug) down on the paper, as she often did. When asked further about this practice she conveyed that paper did not run out of batteries like a phone would, and that paper did not feel rude in the clinical appointment like using a phone or a tablet did.

As patients engage with information practices and planning practices these in turn influence and in part constitute their sense making practices. These concepts are reciprocal: as people learn to “deal” with information in different aspects of their lives, they apply those learned scripts or models to other information management topics or domains. These three practices of information practices, planning practices, and sense making practices, all that constitute the first theme of assemblages that concern the priming or map making of the assemblage. The second theme, the other half of the important conceptual components, are the other actors and materialities that come into play during the priming of the assemblage. In the next section, I focus on these two components: how social actors constitute a personal health information assemblage, and how the materiality of information and tools matters to personal assemblages.

Personal networks are leveraged by every patient as part of the constitution of their personal health information management assemblages. These personal networks include family members, spouses, and close family friends. People closest to the patient’s life, and those that live with the patient, assume a vital role in stabilizing the assemblage. This stabilization occurs through caretakers adopting, assisting, and supporting the patients established information practices and practices for planning and sense making. The role of personal networks in health information management is exemplified in one participant’s management of anxiety in public and before clinical appointments. The caretaker played a pivotal role in helping the patient remember questions, focus the patient’s thoughts, and supported the patient in the waiting room through conversation and relaxation techniques.

‘So I have a traumatic brain injury (TBI) and I forget a lot of things, so she goes and she takes care of, well she takes care of a lot of things. And my post-traumatic stress disorder (PTSD) I have a lot of depression so there’s a lot of times where I’m like fuck it I’m not doing anything but she takes up a lot of it. She goes to my appointments to say look, you know, because I’ll get there, I’ll forget, and I’ll forget to look at my phone. So she’ll go and she’ll be like look you need to look at your phone and she’ll sit there and if I’ll look at a question on my phone or bullet point and I’ll be like I don’t know what the fuck this means, she’ll pick it up and she’ll be like you know, here’s a hint…we’ll sit down like the day before and she’ll be like look, you know, what were you going to ask him, “oh fuck I don’t know”. She’ll like throw me hints and if I don’t get it she’ll be like alright dumb ass this is what you had to ask’ (Patient #6763).

This brazen quote is one of the best direct representations of the information management roles that caretakers and family members play. This portion of the interview transcript shows that, due to the patient’s current health status (TBI and PTSD), the patient often relies on another person that is both familiar with that health status and ways in which the patient manages information. The caretaker provided supportive clues and hints before and during clinical appointments. The caretaker also knew that questions and ideas were written down on the patient’s phone to create a continuous log of questions. Shared access is an inherent trait of assemblages, and that trait is showcased in this characteristic of how personal social networks become connected to the patient’s assemblage. Caretakers are exposed to and understood the patient’s information practices, planning practices, and sense making practices. Caretakers were able to support the patient’s personal practices through knowing how they capture information, the kind of information they manage and organize, and the kinds of practices that patients engage with in order to make sense of that information to support their care.

Of particular interest to show how these assemblages are personal, and what matters help personalize the assemblage, is the nature of the patient’s health concerns. Acute symptoms or mental and behavioral health arrangements are essential traits that contribute to the shaping of the patient’s health information management assemblage. Routine checkups or other minor clinical appointments contained almost no shared information practices. This is not to say that caretakers were not supportive of the patient, but the role of the other person was not the same as the roles taken by social actors in mental and behavioral health contexts. This difference in when and how a caretaker helped with information management tasks is key to understanding the health information needs of patients. Certain conditions require a caretaker to be enrolled as an information storage and retrieval agent that adapts to shifting contexts.

These findings echo previous work that frame the patient caretaker relationship as a collaboration (e.g. Nunes and Fitzpatrick 2015) where caretakers help when the patient is in a difficult or compromised physical and emotional state. Additionally, that many tools designed for patients do not include the caretaker in their design or functionality. This is certainly accurate of My HealtheVet (MHV), which only allows for the patient to be logged in as their own identity, having previously been authenticated in person at a VA field office. However, in every single case where the caretaker would at some point log into MHV for the patient to access health information. This is not a supported function of the health record as, at the time of this research, account delegation was not supported in the health record.

The final component that emerged from this analysis is the role of materiality in the patient’s personal health information management assemblage. All of the previously discussed practices for information management, planning, and sense making are practices that are communicated through and mediated by the different materialities in the patient’s assemblage. Physical qualities of the objects and information these patients use include tools like laptops, tablets, and phones or objects like paper, printed calendars, scraps of information, brochures, and notebooks. The digital qualities are of electronic documents on tablets, phones and laptops (Leonardi 2010). The materiality of information management is a key characteristic of assemblages. Materiality plays into how arrangements are configured and what information management decisions are made. Through interviews and observations of how these participants use digital devices and what printed information they carry on hand, it was evident that purposeful decisions are made for why a particular technology or type of material is used, and those decisions impact the patient’s possibilities of their practices. The material of information matters (Barad 2003). Despite the ability to “go paperless” with tablets and smart phones, the use of paper is still important and fills a unique role.

Establishing an appointment in a calendar can be done in a variety of ways. For various reasons, participants prefer either a paper calendar or a digital calendar, while some prefer to use both. Each of these devices enable other actions and options for the patient. In the case of digital calendars, notifications could be automatically triggered before appointments and sent to devices. Whereas physical calendars were part of a routine or ritual. The participant was usually in a specific place every day and would review their daily events at the location of the paper calendar. Each material option for a calendar comes with different challenges. The struggle to use both is exemplified by one participant:

‘This is like my constant battle [organizing both personal and health information], my whole life is to figure out some way of staying organized here. I oscillate back and forth between paper and electronics, and everything. I went from full size calendars to little calendars to doing it on the computer, to keeping it on Outlook to this care manager thing that we have at work now to using it on my phone. I find myself trying to stay organized in so many different ways that I’m disorganized, you know what I’m saying. I’m trying to find my way of staying organized, you know. Am I a laptop guy? I’m very envious of people, you know, and I ask people at work, too. I’m like you use that; I see you keep your calendar. Because I’m very interested in how people stay organized. Cause I’m very interested in this at work, you know, cause mentally ill are always missing their appointments and I’m like you’ve got to keep a calendar’ (Patient #1079).

This quote typifies the material characteristics found in these health information arrangements: the role of physical and digital materials, the predefined (or not) information organization plans the participant has, stabilization of these components, and the stress of disorganization. This quote identifies the binary between trying to keep health information entirely digital or entirely paper based.

Materiality also manifests through discourse about the concept of security. Specifically, there is a perception that physical information is secure and can be securely discarded. Alternatively, the notion of ephemerality is associated with digital information. The idea is that a person does not really own something unless it is held in that person’s own hands. It is also challenging to reference information if the documents are digital. If a document is printed it becomes permanent, tangible, and accessible. If information is digital, however, it is often seen as easily lost, non-permanent, insecure, and ephemeral. Printed information was overwhelmingly referred to as a “hard copy” and preferred for certain types of documents because of the ability to store printed documents in a physical location that provided the patient with a greater sense of security than if that were a digital document. This was especially relevant concerning sensitive health information. It is important to patients who use paper documents to personally and reliably destroy those documents. When paper is the main choice of information storage, those patients also had paper shredders and specialized techniques for destroying information they no longer needed. One of the more elaborate and vivid examples for paper document disposal follows:

‘It’s [paper shredder] almost like packing material, mine makes like little oblong things, it’s a cross cut and it makes little diamonds. It’s impossible [to reconstruct], you go like this [throws hands in the air] and there’s dust everywhere so it’s really small. But yeah it’s good for [burning]. What I’ve done before I moved, like, I called them paper balls. You get them [paper shredder remains] soaking we and then I had this little press thing that a buddy of mine made that you compact it and then it dries out with the weight of it and then you have this like fire log ball thing for the bottom [of a fire pit] to light it’ (Patient #1630).

Destroying paper is unlike the deletion of digital objects: there is something physical to be destroyed. With digital documents, participants perceived that deleted information could be easily retrieved or copied and that these documents were never truly secure. These participants kept paper records and would shy away from keeping that information digital. The perception of security influenced the type of websites patients would access or what kind of information they would look for when using the internet. In multiple instances, email was avoided on mobile phones because it was perceived to be insecure.

Another practice of material arrangements is the familiarity the respondent has with the material decisions they have made. Specifically, familiarity with the technology is an important factor in determining the practices they are likely to employ. Interviewees compensate for lacking advanced computer use and Internet research practices with other ways such as writing down questions and search results on paper and printing out webpages. Participants with more familiarity in using the Internet to research health did things like use bookmarks, cut and paste text, and save PDF documents in an organized location. These participants enacted digital skills-based practices. However, patients may be familiar with performing work using physical tools and documents and that will influence the information management decisions they make. The story from the respondent below shows the materiality characteristics of health information assemblages.

‘Yeah but you know what, it’s kind of funny too in the same way cause I tell my wife about this with a range card, like for a weapon, I don’t know if you’re familiar with it or not. But we have range cards for like machine guns and other weapons. When I first went in the Army we used to write it on like a piece of paper. Then we got like laminated ones and then we got pens and alcohol markers and then we got Plexiglas and different markers. We have all this stuff and brought all this different stuff, and you know, by the time my career is over you know what I figured out the best thing to do is? An MRE box and pen or pencil, what’s the best way to do this. The best way to do this range card after experiencing all this stuff for me for all these years, was to teach people how to write, to draw the range card and then they could just write it on anything instead of having to worry about bringing all these freakin’ special pens and all of these freakin’ Plexiglas crap, and all this other crap to the field all the time. It’s like I went full circle. It’s like I started out with a pencil and paper and tried all this electronic, well not the electronic stuff, but basically the electronic stuff too because the batteries became a problem and if the stuff breaks you’re screwed, you don’t have it written down anywhere, you can read it anymore. So it’s like oh man this is cool but it’s not really practical, it’s better just to write it down. So it kind of went like full circle with that and that was kind of an eye-opening experience for me because it was years later. Oh we got to get better, we got to get better, no we don’t. There was nothing wrong with it, just leave it alone’ (Patient #1079).

The core element of this story is the changing materiality and decisions of other tools such as pens, papers, and writing surfaces, which later became electronic. Ultimately, for this participant the materiality of the specific writing surface, the meals ready to eat (MRE) box, and a pen or pencil was the preferred way to construct the range card. Certainly, there were other options for constructing the range card, even using a digital tool. For multiple reasons the materiality mattered to the task the respondent was trying to accomplish. These decisions are no different in the arrangements of patients managing health information. Material choices are made based on other characteristics previously discussed in the findings section. Some of these choices are made based on familiarity or other preferences, but the key idea is that PHIM assemblages maintain a characteristic of material choice.