Abstract
We present a novel view of transitions from the lens of patient ergonomics (the “science of patient work”), which posits that patients and other non-professionals perform effortful work towards health-related goals. In patient work transitions, patients experience changes in, for example, health, task demands, work capacity, roles and responsibilities, knowledge and skills, routines, needs and technologies. Medication transitions are a particularly vulnerable type of patient work transitions. We describe two cases of medication transitions—new medications and medication deprescribing—in which the patient work lens reveals many accompanying changes, vulnerabilities, and opportunities for human factors and ergonomics.
Keywords: Patient work, patient engagement, patient ergonomics, transitions of care, medication safety, medical human factors
In this commentary we present a novel view of transitions from the lens of patient ergonomics, i.e., the “science of patient work” (Holden, Cornet, et al., 2020). Patient ergonomics assumes that patients (and others) perform effortful work towards health-related goals (Yin et al., 2020) and that human factors and ergonomics (HFE) approaches can be applied to study and support this work (Holden et al., 2013). Viewed through a patient ergonomics lens, transitions may be described as changes in the nature and conditions of the patient’s work. Below, we present several examples of transitions in patient work. We particularly elaborate on medication transitions: the vulnerable periods surrounding medication-related changes. To conclude, we discuss how research methods and interventions in the HFE literature on transitions of care can be applied to study and improve transitions in patient work.
1. Contrasting views of transitions
The conceptualization of transitions is a matter of perspective. From one point of view, transitions occur when a patient has moved from one setting of care to another or whose care was passed between clinicians (or clinical teams) (Figure 1a) (Coleman & Boult, 2003; World Health Organization, 2016). This is the traditional definition underpinning most of the studies in the literature, including those in this special issue. This is the view of transitions seen through the lens of clinician workers: as on a production line, the clinician works on a patient as they arrive, then passes them downstream.1 The principal goal in this model is continuity, whether between settings, shifts, or clinicians. Interventions towards the continuity goal include standardized handover or discharge procedures and forms, reconciliation of discrepancies (e.g., between pre-and post-hospital medications), and the use of clinical monitoring, home visits, and follow-up appointments (Chhabra et al., 2012; Feltner et al., 2014; LaMantia et al., 2010). Patients in this view play a relatively passive role and receive only education, if anything (Dyrstad et al., 2015).
Figure 1.
Two lenses to see transitions from the points of view of: (a) clinical vs. (b) patient work.
A contrasting view of transitions can be seen through the lens of patient work (Figure 1b). Patient work is the notion that patients, and sometimes their network of informal caregivers (Lambotte et al., 2020), perform effortful activities towards health-related goals (Valdez et al., 2015). The accomplishment of these goals depends on how well the sociotechnical system around the patient was designed to support their performance, much like the case for any other worker (Holden, Schubert, Eiland, et al., 2015; Holden, Schubert, & Mickelson, 2015; Holden et al., 2017). Transitions of patient work, then, are situations when a change has taken place, altering the nature or conditions of a patient’s work. This change can, but need not, be caused by or co-occur with changes in care settings or teams. For illustration, Table 1 exemplifies several types of changes in patient work during hospital-to-home transitions drawn from two recent studies (Werner et al., 2018; Xiao et al., 2019).
Table 1.
Types of changes a patient may experience in addition to changes in the setting of care, following hospital discharge.
Types of change | Examples |
---|---|
Health | from feeling well to feeling poorly, or vice versa |
Task demands | new tasks, e.g., handling insurance matters, attending new appointments, or recording daily weight and blood pressure readings |
Capacity | weakened physiological reserve, but increased family aid |
Roles and responsibilities | from being monitored and cared for by a clinical team to self-monitoring and self-care, or vice versa |
Knowledge and skills | learning about new medications and how to use them |
Routines | re-establishing an exercise regimen or establishing new habits, such as reading nutritional labels and preparing low-sodium meals |
Needs | from medical-physical needs, to social-emotional needs related to coping with anxiety and coming to terms with illness |
Technology | obtaining and learning to use new equipment |
These changes, and many others, may result from various situations, not only during transitions as traditionally defined (Figure 1a). Other situations bringing about patient work transitions might be new prescriptions or adjustments to medications, the onset or resolution of a chronic or acute condition, life events (e.g., marriage or divorce, childbirth or death, a new job or retirement), moving to a new residence or city, the implantation of a new device (e.g., defibrillator), or simply the passage of time and seasons. Importantly, these transitions are vulnerable periods for patients because the timing, volume, and nature of changes may disrupt or otherwise complicate the performance of patient work. For example, after a new diagnosis, a patient is likely to lack information and face fear and anxiety due to high levels of uncertainty; thereafter, they will likely undergo phases of information work in service of longer-term goals such as maintaining routines and emotional acceptance, in addition to new bouts of learning (Burgess et al., 2019; Daley et al., 2019). As another example, new medication prescriptions may be accompanied by the risk of unintentional nonadherence due to forgetting or challenges related to paying for or managing drug supply (Barber, 2002; Mickelson & Holden, 2018). As a third example, changes in health may leave a person less able to cope with the burden of treatment, which, ironically may increase as a person becomes sicker, due to new medications, procedures, and self-care recommendations (Shippee et al., 2012; Van Merode et al., 2018). Importantly, we contend that HFE can mitigate risks in patient work transitions by studying and intervening to support patient work during these vulnerable transition periods.
2. Medication transitions
To illustrate our point, we focus on medication transitions, a particularly common and risky type of transitions in patient work. A medication transition occurs when there is a change in medication, whether it is a new medication, the deprescribing (discontinuation or replacement) of current medications, modification in the prescription or administration regimen, or emergence of new circumstances that shape how patients take their medications. In outpatient and community settings, these transitions are tremendously impactful on patient work (Xiao et al., 2019), as in these two cases:
2.1. Case 1: New medications
Mr. Smith is a 45-year old who has been living with Type-2 diabetes mellitus for several years now. About six months ago, he was given a prescription for a once-daily insulin (insulin glargine) on top of the Metformin tablets he was already taking. He was instructed to inject insulin into his abdomen every evening. During his most recent clinic visit, he was prescribed with a rapidly-acting insulin analog pen injector (insulin lispro). He was instructed to take “two of these”. He was also told to measure and keep track of his blood sugar but never received a measuring kit, despite his provider writing a prescription for it. The next day, his daughter, who lives few blocks down the street, was visiting Mr. Smith and discovered him lying on the floor, profusely sweating, and confused. She called an ambulance and he was rushed to the emergency room (ER).
In the ER, it was determined that he had experienced hypoglycemia and was treated for it. Upon further examination, Mr. Smith told the team that he had injected himself with two doses of the new insulin at once, having dialed 12 units on the insulin pen each time before the injection. He stayed overnight in the ER and was discharged home the following day.
A long-time friend of Mr. Smith who had heard of the incident was visiting him at his house and mentioned about a new blood sugar measuring device prescribed to his granddaughter and one “she wears all the time.” Mr. Smith is very scared of having another episode of hypoglycemia especially due to the fact that he lives alone and help may not arrive in time. During their ensuing conversation, Mr. Smith also comments to his friend how expensive it was to get the new insulin and he was not sure if he is able to continue taking it.
2.1.1. Commentary
The act of writing a new prescription order can be viewed as a critical moment in which the clinician transfers greater responsibility to a patient, effectively making the patient a full-fledged medication manager (Foust et al., 2005). In the above example, Mr. Smith experienced multiple medication-related transitions, stemming from initiation of a new medication—insulin lispro. The change was associated with a potentially life-threatening incident. Adding the new insulin to Mr. Smith’s existing regimen introduced new demands: developing new skills (e.g., operate insulin pen, self-inject insulin, measure and track blood sugar levels); acquiring new knowledge (e.g., how insulin works, what benefits it has, differentiate new insulin from existing, night time insulin); creating new routines (e.g., coordinate with meal, schedule with respect to other medications); and acquiring new strategies (e.g., detecting signs of and responding to hypoglycemia). Patients with Type 2 diabetes are likely to be prescribed multiple medications including those to treat high blood pressure, reduce clotting tendency, manage cholesterol, and control neuropathic pain.
Although Mr. Smith had been living with diabetes for many years, he is relatively new to insulin and vulnerable to adverse effects. He has been on a long acting insulin for 6 months before his provider introduced the insulin lispro. This is a common management strategy in patients with Type 2 diabetes exhibiting signs of treatment failure with oral therapies such as sulfonylureas. Although both forms of insulins act in the same fashion, they exhibit key distinctions with respect to their release profile and how quickly they can lower blood sugar. This has important implications on when and how each type of insulin must be injected. This knowledge may not be apparent to Mr. Smith. Given his experience of injecting the long acting insulin once per night, it is possible that Mr. Smith misunderstood the instruction with his insulin lispro.
Given his medical history, Mr. Smith will continue to need insulin, with a possibility of introducing an even more intensive insulin regimen. This situation will demand frequent monitoring of blood sugar to adjust his insulin doses. This may mean, however, more burden for Mr. Smith as he has to regularly perform blood sugar self-measurement. Mr. Smith had heard about the continuous glucose monitoring device from his friend and does not know if that will be something he can try out. However, the out of pocket expense may be prohibitive for him, even if his doctor is willing to prescribe the device for him. He would also need to learn how to change the sensor every 10 days. Mr. Smith also expressed concern about the cost of his insulin. This may prompt him to discontinue or ration his insulin dose so it can last him longer, at a risk of poor glycemic control and progression of chronic diabetic complications. A cheaper form of insulin sold in a vial may be used as an alternative. However, Mr. Smith’s provider may be reluctant to agree because of limited personal experience with this form of insulin and concern about Mr. Smith’s capacity to measure and draw accurate amounts of insulin from the vial.
2.2. Case 2: Deprescribed medications
Ms. Nguyen is a 65-year old chronic joint pain sufferer experiencing regular sleep disturbances. For years, her physician prescribed diphenhydramine for her sleep and occasionally she would self-administer a nighttime over-the-counter product for pain (e.g., acetaminophen). During a regular appointment, her primary care physician recommended that given Ms. Nguyen’s age, they should change her medications. The physician wrote an order to discontinue the diphenhydramine but did not explain that diphenhydramine is an ingredient found in over-the-counter medicines such as Benadryl® and Tylenol® PM. Later in the visit, Ms. Nguyen admitted to the nurse she was worried about what would happen “now that the doctor took away my sleep pill.” The nurse suggested Ms. Nguyen buy over-the-counter melatonin.
At home, Ms. Nguyen shared with her daughter-in-law her concern about sleep and the change in her medication. This prompted the daughter-in-law to investigate online and to learn that anticholinergic medications such as diphenhydramine are associated with incident dementia and mild cognitive impairment. From then on, Ms. Nguyen received at least one email from her daughter-in-law per day with a new article, or website, or exhortation to avoid anticholinergics. This raised Ms. Nguyen’s anxiety about developing dementia—after all, she had been taking her sleep medication for years—on top of her prior anxiety about getting a good night’s sleep. The emails also confused her by introducing unfamiliar and soundalike words such as anticholinergic, antihistamines, diphenhydramine, dimenhydrinate. She was especially perplexed by her daughter-in-law’s recommendation to buy “over-the-counter ZzzQuil™ with the white label but not the all-purple ZzzQuil™.”
After a week of confusion, Ms. Nguyen went to the grocery store and stood paralyzed in front of the hundreds of products on the over-the-counter shelves. Her eyes flitted from package to package, drawn to pictures of sheep, moons, pillows, clouds, and feathers. She noticed all packages of ZzzQuil™ were both purple and white; she could not tell the difference between what was presumably safe or unsafe for her (i.e., ZzzQuil™ with diphenhydramine vs. ZzzQuil PURE Zzzs™ with melatonin). In fact, all the products she looked at seemed safe, proclaiming themselves “clinically tested,” “proven effective,” “natural sleep formula,” and “non-habit forming.” Frustrated, Ms. Nguyen dismissed her fear of seeming stupid, picked up a product marked “#1 pharmacist recommended” and marched up to the pharmacist’s counter, proclaiming “It says here you recommend this stuff—is it going to help me sleep or give me dementia?” In the end, with the pharmacist’s help, Ms. Nguyen bought the ZzzQuil PURE Zzzs™ product, although she was not happy with its price. On her way back through the aisles, she stopped to resupply her pain medication, purchasing several boxes of Tylenol® PM, without realizing that the “nighttime” version of popular brand of acetaminophen also contained diphenhydramine, the very medication her physician had deprescribed.
In the end, and on the advice of a pain specialist, Ms. Nguyen became dissatisfied with using medications to manage her insomnia. Instead, she began to attend a swimming pool for water aerobics, to treat her underlying pain issues and promote natural sleep.
2.2.1. Commentary
During this medication transition episode, Ms. Nguyen experienced several abrupt changes and is likely to experience several more as time passes. Medication deprescribing is increasingly observed in geriatric care for several reasons, including to reduce the risk of harmful effects, drug-drug interactions, and the treatment burden of polypharmacy (Scott et al., 2015). The deprescribing of anticholinergics (Campbell et al., 2019), in particular, is recommended to reduce short- and long-term risks associated with these medications (American Geriatrics Society, 2019).
As with other patient work transitions, deprescribing is accompanied by many changes with which the patient must cope. For one, deprescribing, can cause physiologic changes, including withdrawal and the re-emergence of symptoms formerly treated by the medication such as pain or insomnia. In the case of Ms. Nguyen, another change is the introduction of new terms and concepts: antihistamines; anticholinergics; various specific medications (generic and brand-name); and dementia risk. Patients may be unaware of these terms; in one study, 100% of patients using medications with anticholinergic effects were unaware of the term or its meaning (Holden et al., 2019). Translating knowledge to action may be even more difficult, as illustrated by Ms. Nguyen’s purchase of an over-the-counter medication (Tylenol® PM) that was potentially unsafe for her.
When deprescribed medications are substituted with other medications or nonpharmacological treatments such as exercise, the patient is challenged to adapt. For Ms. Nguyen, the decision to exercise could have meant finding a way to exercise despite her joint pain, purchasing new activewear or swimwear, and finding an accessible water aerobics program. Such construction of routines and problem solving have been observed before in HFE studies of patient work (Holden et al., 2017; Mickelson et al., 2016; Werner et al., 2018), including documented in-depth cases of an older patient attempting to find a low-impact, accessible, and acceptable exercise routine (Holden, Schubert, & Mickelson, 2015) or to re-establish a self-care regimen after several years of incarceration (Holden, Schubert, Eiland, et al., 2015).
Moreover, deprescribing in Ms. Nguyen’s case led to new out-of-pocket expenses for over-the-counter medications, changes in family dynamics, questions and fears, and a left-over supply of medications.
2.3. General observations
In the two cases, several medication-related changes occurred, neither caused by an acute event, transition of care, or change in care teams. In fact, Mr. Smith’s ER visit and Ms. Nguyen’s encounters with multiple clinicians (primary care physician, retail pharmacist, nurse, and pain specialist) were incidental to the medication transitions that brought about the many changes these patients experienced. The changes were physiological, cognitive, emotional, and operational. Each of them produced vulnerabilities and threatened the patient’s quality of life, adherence, financial wellbeing, family relations, and day-to-day routines. Importantly, during their medication transitions, Mr. Smith and Ms. Nguyen may not have received any support to manage the changes to their work and the accompanying vulnerabilities. The changes were not accompanied by additional services or resources that are often provided during transitions of care (e.g., hospital discharge), such as case management by a social worker, counseling, pharmacy consultation, physical or occupational therapy, financial assistance, or education. Nor were the patient’s information needs assessed and addressed prior or after the change (Attfield et al., 2006). It could even be said that the clinicians in these cases were not aware of the work that patients would have to do during the transition, or did not recognize the presence of a meaningful change in the patient’s work, meaning the work was invisible (Gorman et al., 2018). Invisibility is akin to clinicians seeing what patients do as idealized work-as-imagined, not work-as-done in reality, a problem familiar to HFE experts who caution against conflating the two (Blandford et al., 2014).
Furthermore, medication transitions, and transitions in patient work in general, are underpinned by the longitudinal and evolving nature of a patient’s care experience and associated contexts. The quality of this experience, which may be described as the patient journey, is prone to degradation when clinician and healthcare system goals are incongruent with and do not fully support that of patients (Meyer, 2019).
Table 2 offers a thought exercise about potential interventions for patient work transitions that could be inspired by traditional care transition programs or their components. For example, at hospital discharge, several programs assign patients community-based assistance from an individual specializing in nursing, pharmacy, or medical care. A similar strategy of as-needed, community-based, longitudinal assistance can help patients facing other types of transitions in patient work requirements (e.g., new medication, new disease), contexts (e.g., loss of a job, moving to a new city), or life stage (e.g., end of life, parenthood (Patel et al., 2019)).
Table 2.
Traditional interventions for care transitions and potential analogous interventions applied to support transitions in patient work.
Traditional care transitions interventions | Potential analogous intervention for patient work transitions |
---|---|
Advanced practice nurse conducts patient needs assessment, develops an individualized plan of care, and conducts regular follows up (Naylor et al., 2004) | When patient work transition occurs, a professional assesses new needs and challenges, develops with the patient a plan, and provides ongoing monitoring and support |
Monitoring for “red flags,” warning signs of worsening status (Coleman et al., 2006) | Evaluative self-monitoring and outside monitoring by others (clinicians, friends) during and after times of change |
New role (e.g., community-based paramedic, community health workers) created to follow patients from one setting to another (Shah et al., 2018) or performing home visits (Bailey et al., 2016) | Coach, navigator, or peer who is present for an extended period during which a patient has undergone or may undergo a transition |
Checklists of information to transfer between settings/clinicians (Halasyamani et al., 2006), discharge summary documents (Ooi et al., 2017) | Checklists and summaries of tasks, information, or resources for a patient to avoid forgetting or confusion |
3. Opportunities for HFE
Returning to the concept of patient work, we observe that Mr. Smith and Ms. Nguyen are workers, based on their performance of various health-related tasks, including self-monitoring their disease conditions, managing medications, and learning about new health regimens. Patient work interventions seek to support the patient and their informal care partners in performing these tasks by modifying the work system, including introducing new tools and resources, task redesign, and larger-scale organizational or policy changes (Valdez et al., 2016; Valdez et al., 2015). Interventions to improve Mr. Smith’s and Ms. Nguyen’s performance might have included traditional ones such as education, but also provision of free equipment (testing strips or monitoring devices, safer over-the-counter products), support from others (e.g., coach, health navigator, or online community), or tools for self-monitoring or medication tasks (Holden, Campbell, et al., 2020; Mickelson et al., 2015).
Although HFE has been applied to traditional transitions of care or clinical handovers, there are theoretically many more instances when transitions (or changes) occur in the absence of these shifts in the delivery of care. Like transitions in clinical work, transitions in patient work can be improved using HFE interventions including workflow redesign, team training and standardized communication, tools such as checklists and decision aids, and organizational change (Carayon, 2012; Carayon et al., 2014). Transitions in patient work may also benefit from theories and perspectives typically applied by HFE professionals to the work of clinicians or other professionals: for example, medication transitions, like other work phenomena, can benefit from concepts such as behavior cueing strategies, organizational routines, error mitigation, and resilience engineering (Barber, 2002; Furniss et al., 2014; Schubert et al., 2015; Stawarz et al., 2020).
Given the ongoing and longitudinal care needs of patients, especially those with chronic conditions, an important contribution of HFE is offering methods and approaches to understand and design for the patient journey (Jones et al., 2017; Marquez, 2015; McCarthy et al., 2016). Prominent calls have been made to study the patient journey (National Academies of Sciences, 2018) and a recent update to the family of Systems Engineering Initiative for Patient Safety (SEIPS) work systems models reflects the emerging patient journey paradigm (Carayon et al., 2020). Commonly used methods such as process mapping or cognitive task analysis may serve as a foundation for patient journey mapping but there will likely be a need for adapting existing methods and developing new ones (Holden, Daley, et al., 2020). HFE also offers general approaches such as workload measurement, job design, team training, user-centered design, and participatory design, which can be applied to improving either clinical or patient work (Cornet et al., 2020; Novak et al., 2016).
Supporting transitions of patient work using HFE complements, rather than replaces, existing attempts to support clinician-focused care delivery transitions. Indeed, combining the two approaches may be most effective, especially when transitions of care (i.e., change in settings or clinicians) are accompanied by one or more transitions of patient work (see Table 1). As an example, consider the transition from childhood to adulthood among patients with Type I diabetes mellitus (Peters et al., 2011). This transition involves a change in care delivery from pediatric to adult care that may benefit from various transition of care interventions (Campbell et al., 2016). It also involves life changes that require skills training, self-monitoring technology, education on medical insurance and financial management, peer support, new routines, and other types of interventions that target patient work rather than clinical work (Children’s Hospital of Philadelphia, 2019).
4. Conclusions
Our message, simply put, is that patients experience transitions due to changes in their life or sociotechnical systems. Such transitions, as exemplified by medication transitions involving changes in medications, are vulnerable periods that may benefit from HFE interventions. HFE approaches to address transitions in the delivery of care are candidates for being adapted to also support transitions in the work performance of patients and other non-professionals.
Highlights.
Patient ergonomics argues that patients perform work
Changes in patient work or their work systems constitute a type of transition
Medication transitions are an especially vulnerable period of change
Medication prescribing/deprescribing are crucial types of patient work transitions
Human factors methods can and should address transitions in patient work
Funding:
This work was supported by grants P30 HS024384-01 (Callahan, PI) from the Agency for Healthcare Research and Quality (AHRQ) and R01 AG056926-01 (Holden, PI) from the National Institutes of Health (NIH). The content is solely the responsibility of the authors and does not necessarily re-present the official views of AHRQ or NIH.
Footnotes
Publisher's Disclaimer: This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
Declaration of conflict of interest
R Holden declares no relevant conflict of interest
E Abebe declares no relevant conflict of interest
We anticipate the production line is a provocative metaphor. It is our intent to contrast perspectives on who does the work, not to insinuate clinicians view patients as something they are working on. However, others have reported findings suggesting the language of handovers objectifies patients as seen in metaphors of “sales” or “packaging” Hilligoss, B. (2014). Selling patients and other metaphors: A discourse analysis of the interpretive frames that shape emergency department admission handoffs. Social Science & Medicine, 102, 119–128. . Our broader point is patients and clinicians both work to coproduce health and healthcare outcomes Ocloo, J., & Matthews, R. (2016). From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Quality & Safety, 25(8), 626–632. .
References
- American Geriatrics Society. (2019). American Geriatrics Society 2019 Updated AGS Beers Criteria for Potentially Inappropriate Medication Use in Older Adults. J Am Geriatr Soc, 67(4), 674–694. [DOI] [PubMed] [Google Scholar]
- Attfield SJ, Adams A, & Blandford A (2006). Patient information needs: pre-and post-consultation. Health Informatics Journal, 12(2), 165–177. [DOI] [PubMed] [Google Scholar]
- Bailey J, Surbhi S, Bell P, Jones A, Rashed S, & Ugwueke M (2016). SafeMed: Using pharmacy technicians in a novel role as community health workers to improve transitions of care. J Am Pharm Assoc, 56(1), 73–81. https://www-ncbi-nlm-nihgov.proxy.medlib.uits.iu.edu/pubmed/26802925 [DOI] [PubMed] [Google Scholar]
- Barber N (2002). Should we consider non-compliance a medical error? Quality and Safety in Health Care, 11(1), 81–84. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Blandford A, Furniss D, & Vincent C (2014). Patient safety and interactive medical devices: realigning work as imagined and work as done. Clinical risk, 20(5), 107–110. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Burgess ER, Reddy MC, Davenport A, Laboi P, & Blandford A (2019). “Tricky to get your head around” Information Work of People Managing Chronic Kidney Disease in the UK. Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems, [Google Scholar]
- Campbell F, Biggs K, Aldiss SK, O’Neill PM, Clowes M, McDonagh J, While A, & Gibson F (2016). Transition of care for adolescents from paediatric services to adult health services. Cochrane Database of Systematic Reviews. [DOI] [PMC free article] [PubMed]
- Campbell NL, Holden R, & Boustani MA (2019). Preventing Alzheimer Disease by Deprescribing Anticholinergic Medications. JAMA internal medicine. [DOI] [PubMed]
- Carayon P (Ed.). (2012). Handbook of Human Factors and Ergonomics in Patient Safety (2nd ed.). Lawrence Erlbaum. [Google Scholar]
- Carayon P, Wetterneck TB, Rivera-Rodriguez AJ, Hundt AS, Hoonakker P, Holden RJ, & Gurses AP (2014). Human factors systems approach to healthcare quality and patient safety. Applied Ergonomics, 45(1), 14–25. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Carayon P, Wooldridge A, Hoonakker P, Hundt AS, & Kelly MM (2020). SEIPS 3.0: Human-centered design of the patient journey for patient safety. Appl Ergon, 84, 103033. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Chhabra PT, Rattinger GB, Dutcher SK, Hare ME, Parsons KL, & Zuckerman IH (2012). Medication reconciliation during the transition to and from long-term care settings: a systematic review. Research in Social and Administrative Pharmacy, 8(1), 60–75. [DOI] [PubMed] [Google Scholar]
- Children’s Hospital of Philadelphia. (2019). Transitioning to Adulthood with Diabetes Program. Retrieved July 22 from https://www.chop.edu/centers-programs/transitioning-adulthood-diabetes-program
- Coleman EA, & Boult C (2003). Improving the quality of transitional care for persons with complex care needs: Position statement of the American Geriatrics Society Health Care Systems Committee. Journal of the American Geriatrics Society, 51(4), 556–557. [DOI] [PubMed] [Google Scholar]
- Coleman EA, Parry C, Chalmers S, & Min SJ (2006). The care transitions intervention: results of a randomized controlled trial. Arch Intern Med, 166(17), 1822–1828. 10.1001/archinte.166.17.1822 [DOI] [PubMed] [Google Scholar]
- Cornet VP, Toscos T, Bolchini D, Ghahari RR, Ahmed R, Daley C, Mirro MJ, & Holden RJ (2020). Untold Stories in User-Centered Design of Mobile Health: Practical Challenges and Strategies Learned From the Design and Evaluation of an App for Older Adults With Heart Failure. JMIR mHealth and uHealth, 8(7), e17703. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Daley C, Al-Abdulmunem M, & Holden RJ (2019). Knowledge among patients with heart failure: A narrative synthesis of qualitative research. Heart & Lung, 477–485. [DOI] [PubMed] [Google Scholar]
- Dyrstad DN, Testad I, Aase K, & Storm M (2015). A review of the literature on patient participation in transitions of the elderly. Cognition, Technology & Work, 17(1), 15–34. [Google Scholar]
- Feltner C, Jones CD, Cené CW, Zheng Z-J, Sueta CA, Coker-Schwimmer EJ, Arvanitis M, Lohr KN, Middleton JC, & Jonas DE (2014). Transitional care interventions to prevent readmissions for persons with heart failure: a systematic review and meta-analysis. Annals of internal medicine, 160(11), 774–784. [DOI] [PubMed] [Google Scholar]
- Foust JB, Naylor MD, Boling PA, & Cappuzzo KA (2005). Opportunities for improving post-hospital home medication management among older adults. Home Health Care Serv Q, 24(1–2), 101–122. 10.1300/J027v24n01_08 [DOI] [PubMed] [Google Scholar]
- Furniss D, Barber N, Lyons I, Eliasson L, & Blandford A (2014). Unintentional non-adherence: Can a spoon full of resilience help the medicine go down? BMJ Quality & Safety, 23, 95–98. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Gorman RK, Wellbeloved-Stone CA, & Valdez RS (2018). Uncovering the invisible patient work system through a case study of breast cancer self-management. Ergonomics, 61(12), 1575–1590. [DOI] [PubMed] [Google Scholar]
- Halasyamani L, Kripalani S, Coleman E, Schnipper J, van Walraven C, Nagamine J, Torcson P, Bookwalter T, Budnitz T, & Manning D (2006). Transition of care for hospitalized elderly patients--development of a discharge checklist for hospitalists. J Hosp Med, 1(6), 354–360. 10.1002/jhm.129 [DOI] [PubMed] [Google Scholar]
- Hilligoss B (2014). Selling patients and other metaphors: A discourse analysis of the interpretive frames that shape emergency department admission handoffs. Social Science & Medicine, 102, 119–128. [DOI] [PubMed] [Google Scholar]
- Holden RJ, Campbell NL, Abebe E, Clark DO, Ferguson D, Bodke K, Boustani MA, & Callahan CM (2020). Usability and feasibility of consumer-facing technology to reduce unsafe medication use by older adults. Research in Social and Administrative Pharmacy, 16(1), 54–61. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Holden RJ, Carayon P, Gurses AP, Hoonakker P, Hundt AS, Ozok AA, & Rivera-Rodriguez AJ (2013). SEIPS 2.0: A human factors framework for studying and improving the work of healthcare professionals and patients. Ergonomics, 56(11), 1669–1686. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Holden RJ, Cornet VP, & Valdez RS (2020). Patient ergonomics: 10-year mapping review of patient-centered human factors. Applied Ergonomics, 82, 10.1016/j.apergo.2019.102972. [DOI] [PubMed] [Google Scholar]
- Holden RJ, Daley CN, Mickelson RS, Bolchini D, Toscos T, Cornet VP, … & Mirro MJ. (2020). Patient decision-making personas: An application of a patient-centered cognitive task analysis (P-CTA). Applied Ergonomics, 87, 103107. [DOI] [PubMed] [Google Scholar]
- Holden RJ, Schubert CC, Eiland EC, Storrow AB, Miller KF, & Collins SP (2015). Self-care barriers reported by emergency department patients with acute heart failure: A sociotechnical systems-based approach. Annals of Emergency Medicine, 66, 1–12. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Holden RJ, Schubert CC, & Mickelson RS (2015). The patient work system: An analysis of self-care performance barriers among elderly heart failure patients and their informal caregivers. Applied Ergonomics, 47, 133–150. 10.1016/j.apergo.2014.09.009 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Holden RJ, Srinivas P, Campbell NL, Clark DO, Bodke KS, Hong Y, Boustani MA, Ferguson D, & Callahan CM (2019). Understanding older adults’ medication decision making and behavior: A study on over-the-counter (OTC) anticholinergic medications. Research in Social and Administrative Pharmacy, 15, 53–60. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Holden RJ, Valdez RS, Schubert CC, Thompson MJ, & Hundt AS (2017). Macroergonomic factors in the patient work system: Examining the context of patients with chronic illness. Ergonomics, 60(1), 26–43. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Jones PH, Shakdher S, & Singh P (2017). Synthesis maps: visual knowledge translation for the CanIMPACT clinical system and patient cancer journeys. Curr Oncol, 24(2), 129–134. 10.3747/co.24.3452 [DOI] [PMC free article] [PubMed] [Google Scholar]
- LaMantia MA, Scheunemann LP, Viera AJ, Busby Whitehead J, & Hanson LC (2010). Interventions to improve transitional care between nursing homes and hospitals: a systematic review. Journal of the American Geriatrics Society, 58(4), 777–782. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Lambotte D, Smetcoren A-S, Zijlstra GR, De Lepeleire J, De Donder L, & Kardol MJ (2020). Meanings of care convoys: The structure, function, and adequacy of care networks among frail, community-dwelling older adults. Qualitative Health Research, 30(4), 583–597. [DOI] [PubMed] [Google Scholar]
- Marquez JJ, Downey A, Clement R (2015). Walking a Mile in the User’s Shoes: Customer Journey Mapping as a Method to Understanding the User Experience [research-article]. Internet Reference Services Quarterly, 20(3–4). 10.1080/10875301.2015.1107000 [DOI] [Google Scholar]
- McCarthy S, O’Raghallaigh P, Woodworth S, Lim YL, Kenny LC, & Adam F (2016). An integrated patient journey mapping tool for embedding quality in healthcare service reform [research-article]. Journal of Decision Systems, 25(supp1). 10.1080/12460125.2016.1187394 [DOI] [Google Scholar]
- Meyer MA (2019). Mapping the Patient Journey Across the Continuum: Lessons Learned From One Patient’s Experience. J Patient Exp, 6(2), 103–107. 10.1177/2374373518783763 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Mickelson RS, & Holden RJ (2018). Medication adherence: Staying within the boundaries of safety. Ergonomics, 61, 82–103. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Mickelson RS, Unertl KM, & Holden RJ (2016). Medication management: The macrocognitive workflow of older adults with heart failure. JMIR Human Factors, 3, e27: https://humanfactors.jmir.org/2016/2012/e2027/. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Mickelson RS, Willis M, & Holden RJ (2015). Medication-related cognitive artifacts used by older adults with heart failure. Health Policy & Technology, 4, 387–398. [DOI] [PMC free article] [PubMed] [Google Scholar]
- National Academies of Sciences, E., and Medicine. (2018). Crossing the Global Quality Chasm: Improving Health Care Worldwide. T. N. A. Press; https://www.nap.edu/catalog/25152/crossing-the-global-quality-chasm-improving-health-care-worldwide [PubMed] [Google Scholar]
- Naylor MD, Brooten DA, Campbell RL, Maislin G, McCauley KM, & Schwartz JS (2004). Transitional care of older adults hospitalized with heart failure: a randomized, controlled trial. J Am Geriatr Soc, 52(5), 675–684. 10.1111/j.1532-5415.2004.52202.x [DOI] [PubMed] [Google Scholar]
- Novak LL, Unertl KM, & Holden RJ (2016). Realizing the potential of patient engagement: Designing IT to support health in everyday life In Ammenwerth E & Rigby M (Eds.), Evidence-Based Health Informatics (pp. 237–247). IOS Press. [PMC free article] [PubMed] [Google Scholar]
- Ocloo J, & Matthews R (2016). From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Quality & Safety, 25(8), 626–632. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Ooi CE, Rofe O, Vienet M, & Elliott RA (2017). Improving communication of medication changes using a pharmacist-prepared discharge medication management summary. Int J Clin Pharm, 39(2), 394–402. 10.1007/s11096-017-0435-5 [DOI] [PubMed] [Google Scholar]
- Patel D, Blandford A, Stephenson J, & Shawe J (2019). Understanding The Use Of Social Technologies During A Life Transition: Men’s Experience with Fertility Problems. CSCW, Austin, TX. [Google Scholar]
- Peters A, Laffel L, & Group, A. D. A. T. W. (2011). Diabetes care for emerging adults: recommendations for transition from pediatric to adult diabetes care systems: a position statement of the American Diabetes Association, with representation by the American College of Osteopathic Family Physicians, the American Academy of Pediatrics, the American Association of Clinical Endocrinologists, the American Osteopathic Association, the Centers for Disease Control and Prevention, Children with Diabetes, The Endocrine Society, the International Society for Pediatric and Adolescent Diabetes, Juvenile Diabetes Research Foundation International, the National Diabetes Education Program, and the Pediatric Endocrine Society (formerly Lawson Wilkins Pediatric Endocrine Society). Diabetes care, 34(11), 2477–2485. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Richardson K, Fox C, Maidment I, Steel N, Loke YK, Arthur A, Myint PK, Grossi CM, Mattishent K, & Bennett K (2018). Anticholinergic drugs and risk of dementia: case-control study. BMJ, 361, k1315. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Schubert CC, Wears RL, Holden RJ, & Hunte G (2015). Patients as a source of resilience In Wears RL, Hollnagel E, & Braithwaite J (Eds.), Resilient Health Care, Volume 2: The Resilience of Everyday Clinical Work (pp. 207–223). Ashgate. [Google Scholar]
- Scott IA, Hilmer SN, Reeve E, Potter K, Le Couteur D, Rigby D, Gnjidic D, Del Mar CB, Roughead EE, & Page A (2015). Reducing inappropriate polypharmacy: the process of deprescribing. JAMA internal medicine, 175(5), 827–834. [DOI] [PubMed] [Google Scholar]
- Shah MN, Hollander MM, Jones CM, Caprio TV, Conwell Y, Cushman JT, DuGoff EH, Kind AJH, Lohmeier M, Mi R, & Coleman EA (2018). Improving the ED-to-Home Transition: The Community Paramedic-Delivered Care Transitions Intervention-Preliminary Findings. J Am Geriatr Soc, 66(11), 2213–2220. 10.1111/jgs.15475 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Shippee ND, Shah ND, May CR, Mair FS, & Montori VM (2012). Cumulative complexity: A functional, patient-centered model of patient complexity can improve research and practice. Journal of Clinical Epidemiology, 65, 1041–1051. [DOI] [PubMed] [Google Scholar]
- Stawarz K, Gardner B, Cox A, & Blandford A (2020). What influences the selection of contextual cues when starting a new routine behaviour? An exploratory study. BMC Psychol, 8(1), 29 10.1186/s40359-020-0394-9 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Valdez RS, Holden RJ, Caine K, Madathil K, Mickelson R, Lovett Novak L, & Werner N (2016). Patient Work as a Maturing Approach Within HF/E: Moving Beyond Traditional Self-Management Applications. Proceedings of the Human Factors and Ergonomics Society Annual Meeting, 60(1), 657–661. [Google Scholar]
- Valdez RS, Holden RJ, Novak LL, & Veinot TC (2015). Transforming consumer health informatics through a patient work framework: Connecting patients to context. Journal of the American Medical Informatics Association, 22(1), 2–10. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Van Merode T, Van De Ven K, & Van Den Akker M (2018). Patients with multimorbidity and their treatment burden in different daily life domains: A qualitative study in primary care in the Netherlands and Belgium. Journal of Comorbidity, 8(1), 9–15. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Werner NE, Tong M, Borkenhagen A, & Holden RJ (2018). Performance-Shaping Factors Affecting Older Adults’ Hospital-to-Home Transition Success: A Systems Approach. The Gerontologist, doi: 10.1093/geront/gnx1199. [DOI] [PMC free article] [PubMed] [Google Scholar]
- World Health Organization. (2016). Transitions of Care: Technical Series on Safer Primary Care. https://apps.who.int/iris/bitstream/handle/10665/252272/9789241511599-eng.pdf
- Xiao Y, Abebe E, & Gurses AP (2019). Engineering a Foundation for Partnership to Improve Medication Safety during Care Transitions. J Patient Saf Risk Manag, 24(1), 30–36. 10.1177/2516043518821497 [DOI] [PMC free article] [PubMed] [Google Scholar]
- Yin K, Jung J, Coiera E, Laranjo L, Blandford A, Khoja A, Tai W-T, Phillips DP, & Lau AY (2020). Patient Work and Their Contexts: Scoping Review. Journal of Medical Internet Research, 22(6), e16656. [DOI] [PMC free article] [PubMed] [Google Scholar]