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Informatics for Health and Social Care

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Patient-centered care via health information technology: a qualitative study with experts from Israel and the U.S.

Maxim Topaz , Ofrit Bar-Bachar , Hanna Admi , Yaron Denekamp & Eyal Zimlichman

To cite this article: Maxim Topaz , Ofrit Bar-Bachar , Hanna Admi , Yaron Denekamp & Eyal Zimlichman (2020) Patient-centered care via health information technology: a qualitative study with experts from Israel and the U.S., Informatics for Health and Social Care, 45:3, 217-228, DOI: 10.1080/17538157.2019.1582055

To link to this article: https://doi.org/10.1080/17538157.2019.1582055

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Patient-centered care via health information technology: a qualitative study with experts from Israel and the U.S. Maxim Topaz*a,b, Ofrit Bar-Bachara, Hanna Admic, Yaron Denekampd, and Eyal Zimlichmane

aThe Cheryl Spencer Department of Nursing, Faculty of Social Welfare and Health Science, University of Haifa, Haifa, Israel; bGeneral Medicine, Harvard Medical School & Brigham and Women’s Hospital, Boston, MA, USA; cGeneral Medicine, Rambam Health Care Campus, Haifa, Israel; dHealth Information Technology, Clalit Health Services, Tel Aviv, Israel; eSheba Medical Center, Ramat Gan, Israel

ABSTRACT Although patient-centered care (PCC) is one of the cornerstones of modern healthcare, the role that health information technology (HIT) plays in sup- porting PCC remains unclear. In this qualitative study, we interviewed academic and clinical experts from the US and Israel to understand to what extent current HIT systems are supportive of PCC and how PCC should be supported by HIT in the future. A maximum variation sampling approach was used to identify nine experts in both HIT and PCC from clinical and academic settings in Israel and the US. A qualitative descriptive method was used to analyze the interviews and identify major themes. Experts sug- gested that patient ownership of their disease is a core component of PCC. The majority of the experts agreed that in both Israel and the US, the current situation of PCC implementation is relatively poor. However, HIT should play an important role in making patients owners of their health and treatment and helping providers in delivering better PCC. Central domains of PCC via HIT were providing clear information and support for patients and promoting care that is based on patient values and preferences.

KEYWORDS Patient-centered care; quality of care; health informatics; electronic health record; qualitative descriptive study

Introduction

Over the past few decades, there were several fundamental changes that shaped the way healthcare is viewed and practiced internationally. On one hand, healthcare has become more patient-centered with ever-increasing attention to patient attitudes, values, and preferences as an integral part of health services delivery. Another major change is the massive introduction of health information technology used today by many health-care providers in their everyday work, for example the electronic health records.

Patient-centered care

Patient-centered care (PCC) is defined by the Institute of Medicine as “providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions”.1 In the United States (US), PCC was included as one of the six domains of quality by the groundbreaking Institute of Medicine report titled “Crossing the Quality Chasm: A New Health System for the 21st Century”.1 In Israel, providing PCC was also prioritized at the national level.2 Several key principles guiding the provision of PCC were developed

CONTACT Maxim Topaz [email protected] The Cheryl Spencer Department of Nursing, Faculty of Social Welfare and Health Science, University of Haifa, Abba Khoushy Ave 199, Haifa 3498838, Israel.

*The corresponding author has since changed his affiliation to: Columbia University School of Nursing, 560 W 168th St, New York, NY 10032, USA Phone: +972-53-919-3777 © 2019 Taylor & Francis Group, LLC

INFORMATICS FOR HEALTH & SOCIAL CARE 2020, VOL. 45, NO. 3, 217–228 https://doi.org/10.1080/17538157.2019.1582055

internationally during the past decades, for example the eight principles of PCC introduced by the Picker Institute and The Commonwealth Fund.3

Over the years PCC has become one of the cornerstones of modern healthcare in many countries. Multiple studies have shown that the practice of PCC leads to better outcomes, for example decreasing the rates of depression remission,4 achieving better blood glucose levels among diabetes patients,5 increasing patients’ levels of physical activity,6 among many others.7 PCC is recognized as an important aspect of care in both inpatient and outpatient settings.8

Even though awareness for PCC and its benefits is growing, the integration of PCC into daily clinical practice sometimes remains less than satisfactory. For example, our team has conducted a series of studies that examined the extent to which patient preferences are taken into consideration by doctors and nurses in four different countries (US, Denmark, United Kingdom, and Israel). We found that health providers are rarely eliciting patient preferences and infrequently act according to patient expectations to improve satisfaction with care.9,10

Health information technology and patient-centered care

Health information technology (HIT) has become increasingly prevalent in modern healthcare. For example, the adoption of electronic health records (EHRs) has peaked over the last decade. In the US, the Meaningful Use legislative initiative required that all health-care settings use EHRs by 2016, leading to an unprecedented spike in hospital EHR adoption rates from 15% in 2010 to 96% in 2015.11 In contrast in some other countries, like Israel, EHRs have been implemented in many hospitals and outpatient settings for a longer period of time of about two decades.12

HIT is envisioned to enable effective PCC13–16, however in practice, we found few studies that examined the role of technology in PCC.17,18 Moreover, an emerging body of evidence suggests that some HIT functionalities might hinder PCC.19–23 For example, in our recent survey, nurse informa- ticians from 45 countries reported low satisfaction with EHRs and identified many ways in which EHRs serve as a barrier to providing high-quality PCC.24 One-fourth of the nurses reported that patient information cannot be shared between the EHR systems (which is a core requirement for PCC), while one-third of the nurses complained on poor system usability (making extraction of patient information very hard). Similar concerns were reported about limited EHRs’ ability to facilitate care transitions,20 extensive documentation time hindering patient-provider contact,21,22

and limited EHR usability that prevents providers from getting patient information they need.23

Today, average health-care providers spend a staggering 20–40% of their clinical time on EHRs use21,22 yet very little is known about the extent to which this had impacted PCC.

Unanswered questions about PCC and EHRs

Although PCC is one of the cornerstones of modern healthcare, the role that HIT plays in supporting PCC remains unclear. In this qualitative study, we interviewed academic and clinical experts from the US and Israel to understand to what extent current HIT systems are supportive of PCC. In our interviews, we also explored the key domains of PCC that should be supported by HIT in the near future. We have chosen the two countries because we wanted to examine PCC in two different health-care systems. In Israel, the healthcare system is universal and it is centralized around the major payer for health services - the Ministry of Health. The Ministry of Health distributes funds to four health maintenance organizations who in turn provide health services to the Israeli popula- tion. In Israel, several HIT systems, like electronic health records and regional/national health information exchanges, were introduced into practice more than two decades ago.25 In comparison, the US healthcare system is decentralized and there is no universal payer for health services. Instead, about half of healthcare spending comes from private funds (households or private businesses), the federal government contributes about 30% and the rest of healthcare is paid for by the state and local governments.26 Most US healthcare is delivered privately, even if it is publicly financed. Although

218 M. TOPAZ ET AL.

several hospitals in the US were pioneers in HIT, most of the US HIT was introduced into practice at the national scale during the past decade. For example, government incentives increased the adoption rate of electronic health records by the US hospitals from less than 25% in 2008 to more than 96% adoption by 2016.11 Examining PCC in the context of HIT in two different health-care systems has the potential to uncover important aspects that might have been missed if we were to limit the study to any one particular country. For the purposes of this study, we broadly defined HIT as any technology that is used by health-care providers, patients, and their families during engage- ment in health-care services.

Methods

Conceptual framework

Our conceptual framework is based on the Picker Principles of Patient-Centered Care first intro- duced in the mid-1990s.27 Using a wide range of focus groups (with recently discharged patients, family members, physicians, and non-physician hospital staff) combined with a review of recent literature, researchers from the Harvard Medical School, on behalf of Picker Institute and The Commonwealth Fund, defined eight primary dimensions of PCC. These dimensions included: (1) Respect for patient’s values, preferences and expressed needs; (2) Coordination and integration of care; (3) Information, communication and education; (4) Physical comfort; (5) Emotional support and alleviation of fear and anxiety; (6) Involvement of family and friends; (7) Transition and continuity; and (8) Access to care. Picker Principles of Patient-Centered Care have directed us in constructing this study’s interview guide and identifying codes for thematic analysis of the study findings.

Study sample

In our sample size estimation, we used an approach aimed at maximizing the study’s “information power”.28 In general, the larger the information power of the sample, the lower the number of participants needed. Factors affecting information include study aim, sample specificity, use of established theory, quality of dialogue, and analysis strategy. In our case, the least amount of participants was needed given the following considerations: the study’s aim was specific; the combina- tion of participants was highly specific for the study aim; the analysis was supported by an established conceptual framework; the interview dialogue was strong (there was a clear communication between the researcher and study participants); and the data analytics approach was explicit (thematic analy- sis) .28

We used a maximum variation sampling approach to identify experts in both HIT and PCC from clinical and academic settings in Israel and the US. Study experts were identified via a combination of literature search and clinical position seniority in major clinical institutions in both countries. The final sample of nine experts was well balanced in terms of representation of clinical and academic settings as well as representation from both countries (see Table 1). This study received an Institutional Review Board (IRB) approval from the University of Haifa, Israel (#355/17).

Data collection

The interview guide was developed by the study team based on the study goals and the conceptual framework (Picker Principles of Patient-Centered Care). Our first set of interview questions was focused on exploring the experts’ definition of PCC and their view of PCC in general and in the context of HIT. Next, we asked the experts about the current state of PCC in the setting they are familiar with, and whether and how the principles of PCC are implemented in HIT systems. Lastly, experts were asked about their “ideal world” vision for HIT to support PCC. All the interviews were conducted by the

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primary investigator on this study (MT), who is an experienced qualitative researcher. Five interviews were conducted in person and four interviews were conducted on the phone.

Each of the study experts provided consent to participate in the study and completed a semi- structured interview with the study team based on the interview guide. All interviews were audio recorded and transcribed verbatim. The interviews lasted between one and a half to two hours.

Data analysis

To analyze the expert interviews in this study, we used thematic analysis, a qualitative descriptive approach for identifying, analyzing, and reporting themes within data.29 Analysis phases were:

(1) Familiarizing with data: The study team has familiarized themselves with the interviews by listening to the recordings, reading the transcribed data and noting down initial ideas.

(2) Generating initial codes: An initial coding scheme was then generated based on the study’s conceptual framework, the Picker Institute’s Eight Principles of Patient-Centered Care.

(3) Data coding: All coding was done using an RDQA software (R package for Qualitative Data Analysis).30 Two researchers trained in qualitative analysis (MT and OB) independently coded the transcribed interviews. The codes were assigned to informative features of the data (phrases, sentences or paragraphs).

(4) Inter-coder reliability was assured by dual coding of the first three interviews; after each interview, the coding was reviewed for similarities and variations by comparing the level of agreement between the two coders. Discrepancies were discussed. The inter-coder reliability was determined to be greater than 95% agreement and each researcher continued and coded the remaining six interviews separately. When new codes emerged, they were discussed between the two coders and added to the coding scheme, when necessary. The two coders agreed on all final coding and these results were shared with the study team.

(5) Searching for themes: Codes were collated into potential themes, which helped organize the data relevant to each potential theme. Themes were evaluated to estimate their fit in relation to the coded extracts and the entire data set.

(6) Defining and naming themes: Themes that emerged were defined and further refined. For each theme, we identifying the “essence” of what each theme is about, and determined what

Table 1. Expert sample characteristics.

Category N (%)

Professional background Physician 2 (22%) Nurse 2 (22%) Human factors analysis/human computer interaction experts 3 (33%) Other (socio-technical domain & social work) 2 (22%)

Highest degree PhD 7 (88%) MA 2 (22%)

Country US 3 (33%) Israel 3 (33%) Both* 3 (33%)

Affiliation Clinical setting (hospitals or health maintenance organizations) 3 (33%) Academic setting (universities) 3 (33%) Both academic and clinical setting** 3 (33%)

* Experts who spent more than 5 years of their professional career in both US and Israel.

** Experts who are currently affiliated with universities and engaged in clinical work.

220 M. TOPAZ ET AL.

aspect of the data each theme captured. This helped to generate clear definitions and names for each theme.

(7) Producing the report: A final report was produced with a selection of vivid, compelling interview quotes. The study themes were also related back to the research question and literature review, producing a report of the analysis presented here.

Methodological rigor of the thematic data analyses was maintained through an audit trail and periodic debriefing with the study team. Reliability was measured via consistency of interpretation and coding of the qualitative data.31 An audit trail of process and analytic memos and coding books was maintained, supporting the credibility of the results.

Results

Five themes emerged from the analysis, including: “Expanding PCC definitions to include patients’ ownership of their health”, “Lack of PCC in clinical practice today”, “HIT provides only partial support for PCC in today’s clinical practice”, “Ideal world: HIT should help seeing the whole patient as owner of their health”, “Key areas for HIT support of PCC”. The next sections describe each of the themes in detail.

Expanding PCC definitions to include patients’ ownership of their health

Overall, most of the experts in this sample described PCC as care that is based on patient’s values, beliefs, and goals, for example “… patient centered care is care that is appropriate to the patients’ needs and in a personalized way, that takes into consideration the culture of the patient and the views, the specific aims of life or goals of life.” In a similar vein, another expert said that PCC is “… being respectful of and responsive to individual patient preferences, needs and values, and ensuring that patient values guide our clinical decision.”

One prevalent and relatively new HIT-related theme of patient ownership of their health emerged. For example, in defining PCC experts suggested that “…patient is the owner of his disease management…” and that providers’ goal is to “…engage the patient in all phases and processes of care…”. Technology is envisioned to support collaborative processes of health improvement and to allow patients to take an active part in all care decisions and activities, for example “…[HIT should allow] patient to be in charge of his own health, to allow the patient to make the decisions together with the practitioners…” and “ …[HIT should enable] to achieve shared information, shared deliberation, and shared mind.”

Lack of PCC in clinical practice today

Although there are a few positive examples of PCC in practice, most of the experts suggested that PCC implementation remains poor in both the US and Israel and there is much room for improve- ment in order to achieve care that is driven by patient values.

Lack of PCC organizational culture was viewed as one of the largest barriers for implementing PCC in practice. For example, experts suggested that “… there are still gaps [in PCC implementa- tion], and many organizations are struggling to create this culture of patient centered care…” or “… We don’t do it enough [PCC]. We are patronizing. I think we know what’s best for our patient, and sometimes it’s because we don’t have the time.” One expert deliberated “There are a lot of people making decisions throughout any episode of care. And they are not aligned with some central focus; which is the patient, and what the patient wants and what the patient states as preferences and needs and goals… it really all falls apart at that point.”

Another common barrier was lack of adequate health providers’ training to be able to implement PCC. For example, “… many of them [clinicians] believe that they don’t have the appropriate

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education to deal with that [PCC]…” and “… even in the medical school or nursing school we’re not really taught now to be very much interested in what the patient wants …”. Another expert identified lack of time and resources allocated for PCC training in practice “ … although they very much agree with the idea of doing patient goal elicitation [homecare agency’s management], they don’t have the time to train nurses on it.”

HIT provides only partial support for PCC in today’s clinical practice

There were a few examples of HIT support for PCC implemented in clinical practice today. For example, experts from both countries described that patient portals are being used in inpatient and outpatient settings to give patients access to their information. Another example was using mobile devices to collect patient-reported outcomes in inpatient settings.

On the other hand, most of the experts suggested that there is still a large gap in HIT implementation to promote PCC. For example, “…clinicians refrain from using the electronic health record, especially while talking to the patient because it’s an interruption. They feel like, either I focus on the computer, or I focus on the patient, I can’t do both… “, and “…I did not hear or see how the patient goal information was connected to the plan of care in any way. It seemed disconnected…”. Even in settings where information exchange is common (mostly Israel), practi- tioners reported using it infrequently for PCC-related aspects of care because of poor usability and other issues “… [about using the national information exchange system in Israel] it is time consuming, and I think it’s focused on medical information, but not information about the person in the center.”

In addition, several experts suggested that HIT in outpatient settings is more supportive of the PCC. In inpatient settings, HIT systems’ design was often found to be disruptive of the PCC workflows, for example “… But the design is so bad that the patient won’t even be able to see anything [from the EHR], especially in inpatient care, because he is lying down…” or “… and I’ve seen the [HIT] systems in Israel and I have seen the system here [the U.S.]. And it seems that, the design does not support the patient narrative or the clinician work-flow.”

Ideal world: HIT should help seeing the whole patient as owner of their health

When asked about the role of HIT in PCC in an “ideal world”, experts suggested that informa- tion technology should help providers see the whole patient, and provide tools for patients to become owners of their health. For example, “… information technology would allow us to bring them all into one [patients and providers], to talking the same language, into one platform …”. Several experts pointed out that patients see healthcare as an integral part of their life, while clinicians build systems that are often setting specific, for example inpatient or outpatient HIT systems “… artificial focus on just [one] episode and encounter … takes away from that perspective of the whole patient… the EHR often just drives the user into a very focused and short-term view of the patient”. PCC requires systems that are much more integrative and include diverse sources of health data. At the very least, HIT systems were envisioned to summarize, collect and present PCC-related health data, like patient preferences and goals, for example “… natural language processing that can identify which information to pull out, instead of having someone search go through them“

In addition, HIT was suggested as one of the tools to guide providers in implementing different steps of PCC in practice. For example, HIT can serve as an “… intelligent guide…” to trigger goal elicitation conversations “… So to kind of trigger that the conversation should happen, here’s information, and resources and evidence that can be shared with the patient…”, or HIT can be used to connect patient goals, problems, and interventions, for example “…Ultimately, I would see that, when [using HIT] the nurse does the plan of care, that the patient goals are documented, and then the interventions and the education are configured to reflect those goals”.

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Finally, experts suggested a few domains of care where HIT can help facilitate providing high- quality PCC in the near future. The most common domain was using HIT to provide clear, comprehensible information and support for patients, for example “… providing them [patients] with additional information regarding their health condition, referring them to external recourses, providing them hardcopy of any customized information …”. In addition, experts suggested that HIT should be used to promote care that is based on patient values and preferences. For example, “ [HIT can help in] not losing actual patient voice… it will probably be a powerful thing to really make a landing page for part of that summary for the care team to see; what is it that the patient’s saying, or what they want.”

Key areas for HIT support of PCC

We found support for each of the eight Picker Institute’s Principles of Patient-Centered Care in experts’ interviews. Table 2 provides summary descriptions on the potential role of technology for each of the PCC principles and presents exemplary quotes for each principle.

Discussion

Although experts in this study sample defined PCC similarly to the most prevalent definitions identified in the literature, one significant and relatively new theme of patient ownership of disease emerged. In the context of this HIT-focused study, patient ownership of disease meant creating an environment in which patients own, or at least have access to, their health information. In a scenario where patients would be able to access their health information, clinicians’ role was described as actively seeking to achieve shared deliberation and shared mind with the patients. HIT was seen as a key tool to help achieve these goals.

This shift to patient’s ownership of their disease through better HIT is supported by the current literature. For example, a recent article published in the Journal of American Medical Association suggests that healthcare is undergoing a paradigm shift, moving from an approach in which “the doctor will see you now” to “the patient will see the doctor now”.32 Patients are seen as active participants in their care rather than passive recipients of health services. For this paradigm shift to happen, patients or their authorized representatives need to be able to control and access their data. Other studies are beginning to show that patient ownership of their data benefits patients and clinicians. For example, access to physician notes after medical encounters was shown to improve patients’ symptom management and medication adherence.33 Similarly, direct release of lab results to patients was found to increases patient engagement and utilization of care.34 Our results support this emerging evidence and highlight the critical role of HIT in achieving PCC.

Most of the experts from both countries felt that in the current clinical settings, there is much room for improvement in order to achieve care that is driven by patient values. Some of the central barriers to PCC implementation were the lack of PCC organizational culture and lack of adequate clinician PCC training and education. These results are in tune with findings from other interna- tional studies. For example, results from recent US study of health-care professionals’ conceptualiza- tion of PCC show that many clinicians charged with PCC implementation lacked basic knowledge about PCC.35 An international study that included Israel and US has found that nurses and physicians are not actively asking patients about their care expectations and satisfaction.36,37

Researchers from Sweden,38 other European countries39 and Australia40 have found similar issues with lack of clinician PCC understanding and rigid organizational culture prohibitive of PCC.

We identified a few examples where HIT was used to support PCC in the current clinical practice. For example, two experts from major hospitals in Israel and the US described that they are currently experimenting with patient portals in inpatient setting where important information is presented to patients in several hospital departments. On the other hand, the majority of experts suggested that there is still a large gap in HIT implementation to support PCC. HIT was reported to be interruptive

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Table 2. Description of specific domains where health information technology should support patient-centered care.

Sub-theme* Sub-theme description Quote/s

Information, communication, and education

Sharing information between patient and healthcare providers is crucial to support PCC. Information shared with the patient should be patient-tailored (in terms of health literacy and specific data shared) to improve shared decision making.

“… [HIT should help] to communicate visually, or in some way that is cognitively understandable by laypersons.” “… [HIT should help in] giving patients information and resources where they can read it on their own, and digest it as they make the decision.” “Transparency is really important, so whether that’s in providing, the different options for treatment, being really transparent what those options are and what the risks and what are the potential benefits…”

Respect for patients’ values, preferences, and expressed needs

HIT can help providers in starting PCC conversations (e.g., goal elicitation), storing PCC-related information (e.g., patient preferences) and connecting patient goals, health problems and interventions.

“ … [HIT is] an instrument that would augment nurse training, so that there would be a guide for helping the nurse phrase the goal elicitation questions…” “… [HIT should help in] capturing that conversation happened, and why something was chosen, is important. Because later on, there can be other clinicians that aren’t aware of that conversation and why certain decisions were made. It can be essential and informative to a treatment or a care plan moving forward…” “…Ultimately, I would see that, when [using HIT] the nurse does the plan of care, that the patient goals are documented, and then the interventions and the education are configured to reflect those goals”.

Coordination and integration of care/transition and continuity**

HIT systems should enable providers to see the whole patient rather than a series of disconnected encounters. Patient generated data should be gathered and made accessible to the care team across health care settings.

“… Interoperability helps encourage and provide patient-centered care, because providers share the complete set of data, they know exactly what happened to the patient, and obviously, care would be better. We have a lot of evidence that quality of care has improved, that waste is reduced and healthcare costs are reduced.” “… And so when you’re really delivering patient-centered care, to have this artificial focus on just this episode and encounter, I think takes away from that perspective of the whole patient. And so, the EHR is often just drives the user into a very focused and short- term view of the patient.” “… But so, in designing our systems, we really need to figure out that information flow, and that the patient entered data is highly important and it shouldn’t be considered secondary. We need to really centralize it, display it, and make sure that the whole care team is aware of it.”

Involvement of family and friends

HIT can help to actively involve patients’ significant others (e.g., family or friends) in the care processes. Sharing patient information should be done in a safe manner where the patient decides on the extent of access to data.

“… Basically, these [electronic] tools create new opportunities for patients and family members, a new potential to participate actively in their care.” “… So one of the things that acute care patient portals have yet to fully succeed on, is showing the schedule of the day, and this is probably one of the, at least I’ve seen, most frequently requested things from patients and families. Particularly families, because they’re working! Or they’re there, but they want to be able to go grab a cup of coffee, and not miss when many doctors coming. I mean families have schedules they have to keep too – but we don’t really respect it in health care.” “… proxy access means you are giving somebody access to your whole record. You don’t have any control of the granularity of it… a patient should be able to have some control over what that looks like…”

Emotional support and alleviation of fear and anxiety

HIT can support provider-to-patient and patient-to-patient conversations to alleviate fear and anxiety and provide emotional support.

“… [providing relevant information] allows them [patients] to be more comfortable in terms of understanding what’s going on around them, giving them more information to reduce anxiety, reduce uncertainty…” “… HIT platforms that enable patients to communicate with patients with similar conditions and empower them…”

Access to care HIT can support patients’ access to care and enable providers to understand patients’ access to care.

“… [HIT can support understanding] physical environment, does somebody have access to grocery stores? If you are asking someone to create a meal plan with certain characteristics while there’s no grocery stores nearby that sell that type of food”

Physical comfort HIT systems should be designed to support PCC (e.g., computer screens that can be shown to patients who are lying down).

“… But the design is so bad that the patient won’t even be able to see anything [from their electronic health record], especially in inpatient care, because he’s lying down. And it is not designed in a way that is supposed to be seen by a patient.”

*Sub-themes of theme number 5 “Key areas for HIT support of PCC” are based on Picker Principles of Patient-Centered Care and are sorted by the frequency of appearance in the interviews (from the most discussed to the least discussed).

**Principles “Coordination and integration of care” and “Transition and continuity” were merged since they referred to similar ideas in expert interviews.

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of PCC oriented workflows and lacking PCC related functionality. For example, clinicians refrained from using the EHR while talking to the patient because it was considered an interruption and the EHR did not allow clinicians to connect documented patient goals to interventions. These results are supported by a growing body of literature. For example, in a recent systematic review of 41 studies focused on patient-physician communication, researchers have found that EHR use interrupts nonverbal engagement between patients and physicians and interferes with capture of psychosocial and emotional information.41 In another study, it was found that multiple health practices experi- enced common challenges with their EHRs’ capabilities to document and track relevant behavioral health and physical health information.42

Experts in our study have also reported that clinicians are facing challenges with access to patient data across the care continuum. Surprisingly, these challenges were persistent even in Israel where a national health data exchange enables providers to access inpatient and outpatient information for a significant proportion of Israeli population.43 Some of the major reasons for not using the available information were the lack of EHR usability and insufficient PCC related information within the EHR. In multiple other studies, similar issues with EHR use have also been identified. For example, in a series of recent studies from the US, it was indicated that EHR did allow adequate documenta- tion and tracking of relevant behavioral health and physical health information such as mental health diagnoses or behavioral health visit notes.42,44 Other studies indicated that some PCC related information is available in free text clinical notes within the EHR (e.g., information about poor social support within discharge summaries),45 however EHRs lack built-in tools to easily search for this information. Our results coupled with the recent studies suggest that more efforts are needed to improve the current functionality of HIT to support PCC. This might require a complete redesign of EHRs, in a fashion that would improve user functionality as well.46

When asked about the role of HIT in PCC in the ideal world, experts in our sample expressed several common ideas. First, most of the experts suggested that HIT should help health providers see the whole patient. Currently, information about healthcare is very fragmented and it includes a mosaic of clinically focused episodes of care. In order to achieve PCC, a shift is needed from this fragmented view to a holistic picture where patients’ values, preferences, and goals are in the center. For example, one expert in our sample envisioned a patient “landing” page within the EHR where the most important information about a patient is presented, including patients’ goals and values. Another common idea was envisioning HIT as a tool for patients to become owners of their health, which should lead to increased patient engagement and other positive outcomes. HIT was described as a platform that should enable health providers and patients “… achieve shared information, shared deliberation, and shared mind.”

Finally, our study pointed to several domains where HIT can help facilitate providing high-quality PCC in the near future. The most common domains were using HIT to provide clear, comprehen- sible information and support for patients and to advance care that is based on patient values and preferences. Our results showed that HIT can help in promoting each of the eight Picker Institute’s Principles of PCC in practice.

This study has several important limitations. First, this was a thematic analysis of interviews with nine experts and our results’ generalizability is limited. Also, the study experts were from major academic institutions and leading clinical centers, which also impacts the generalizability of results. In addition, our study experts mostly represented medicine and nursing (except for two participants with socio-technical and social work backgrounds) and incorporating experts from other profes- sional backgrounds might have resulted in different results.

Conclusions

This qualitative descriptive study with nine experts in PCC and HIT from Israel and the US aimed to explore the existing state of HIT for better PCC and identify venues for further development. In addition to common PCC definitions in the literature, experts suggested that patient ownership of

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disease is a core HIT-related component of PCC. A majority of the experts agreed that in both Israel and the US, the current situation of PCC implementation is relatively poor due to providers’ lack of training and rigid organizational cultures. In the current clinical practice, HIT was not seen as a critical tool for PCC implementation. However, HIT can and should play a major role in making patients owners of their health and treatment, and helping providers in delivering better PCC. Some of the central domains where HIT can be used in support of PCC were providing clear, compre- hensible information and support for patients, and promoting care that is based on patients’ values and preferences.

Ethics approval and consent to participate

This research has been performed in accordance with the Declaration of Helsinki. The Institutional Review Board of the University of Haifa – Faculty of Social Welfare and Health Sciences grated approval for this study and research on human subjects on October 19, 2017, under approval number 355/17. All participants in this study have given written consent to the inclusion of material pertaining to themselves. They acknowledge that they cannot be identified via the paper and have been fully anonymized.

Availability of data and materials

The data that support the findings of this study are available on request from the corresponding author, MT. The data are not publicly available due to privacy restrictions.

Disclosure statement

No potential conflict of interest was reported by the authors.

Funding

This work was supported by the Israel National Institute for Health Policy Research (NIHPR) .[ר/2017/232]

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