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Physicians' strategies for using family unit history data: having the data is not the same as using the data

Received:

20 December 2019

Revision received:

02 June 2020

Published:

08 October 2020

Abstract

Objective

To place needs in a clinical determination support tool development by exploring how master intendance providers currently collect and use family wellness history (FHH).

Design

Survey questionnaires and semi-structured interviews were administered to a mix of primary and specialty care clinicians within the University of Utah Health system (forty surveys, 12 interviews).

Results

Three key themes emerged regarding providers' drove and use of FHH: (1) Strategies for collecting FHH vary by level of endeavor; (ii) Documentation practices extend beyond the electronic health record'southward dedicated FHH module; and (3) Providers desire feedback from genetic services consultation and are uncertain how to refer patients to genetic services.

Conclusion

Written report findings highlight the varying degrees of engagement that providers take with collecting FHH. Improving the integration of FHH into workflow, and providing decision back up, besides every bit links and tools to help providers better utilize genetic counseling may improve patient care.

OBJECTIVE

Innovation in genetic mapping and testing has created exciting diagnostic and therapeutic opportunities that hope to save lives, especially in the fields of oncology and childhood diseases. 1 Family wellness history (FHH) screening is a critical get-go step in making these promises come to fruition. 2 FHH is necessary to assess an individual'south run a risk of affliction, support appropriate surveillance and optimal treatment regimes, and identify patients in need of farther genetic counseling. 2 , 3 FHH also affords an opportunity to extend intendance to a patient'south family members who may be asymptomatic carriers. 4 , v Existing literature suggests that patients have low knowledge about their own FHH and publicly available online tools for collecting FHH remain underutilized. 6 , 7 Providers need tools to ameliorate assist patients understand the importance of FHH. They too need computer-supported protocols to fully utilize it in clinical decision-making. 1 , 8 , ix In the era of increasing genetic innovation, FHH data needs to be personalized and actionable in order for providers to fully prefer it. As a starting point for assessing the potential for FHH to inform conclusion support that facilitates changes in screening and intervention patterns, this report sought to understand how primary intendance providers integrate FHH into their workflow in order to make clinical decisions. The study was conducted in a large university-based healthcare system with 1 integrated electronic health record (EHR) system (Ballsy®) for both inpatient and outpatient settings. The EHR software contains an off-the-shelf FHH section that is available to all Epic® customers. Providers and clinical staff can access the FHH department through a "tab" in the EHR and enter FHH assertions in structured fields using drop-downwards menus. Similar functionality is available in other EHR products. This enquiry was part of a larger study to develop automated methods to identify genetic risk information from the EHR targeting colon cancer, breast cancer, and ovarian cancer. The report was canonical by the University of Utah IRB (IRB_00085868).

Groundwork AND SIGNIFICANCE

Clinicians have grappled with the complexities of FHH for decades, including difficulties integrating FHH collection in clinical workflows, lack of standardized FHH collection instruments, and issues with FHH accuracy. 10–13 The uptake of EHRs across healthcare settings in the U.s. coincided with a growth of various digital FHH drove tools facing the same problems. two , 14–16 The advent of precision medicine has meant increased potential value in FHH, even as efforts to standardize and automate its collection remain works in progress. 17–20

While physician attitudes toward using FHH are generally positive, 21 barriers to collecting FHH during visits can exist substantial. 22 Collection of FHH and the processes used for documentation and coordination vary in the published research. 23 The most oftentimes cited barrier to FHH collection is the time required during clinical encounters. six , vii , ix In settings that have an EHR with a family history module, time spent processing the information collected past others tin be a problem for high-book clinical settings. Incomplete FHH can substantially decrease usefulness, and even ascertaining the adequacy of documented FHH is complicated past the common practice of recording FHH in dispersed locations throughout the EHR. 15 , sixteen Even when FHH is adequately documented, existing literature suggests that providers may lack knowledge of how to use this data to counsel patients, to track and monitor, and to coordinate with genetic services. 15 , 23–29

The existing literature highlights the importance of FHH collection methods that see ii goals. Offset, FHH collection systems must be efficient, easy to use, with minimal time burden. Second, FHH decision back up is needed that will maximize appropriate and patient-tailored use of screening, particularly for individuals at college risk for hereditary diseases. 30 To back up tool evolution to meet these goals, this study sought to characterize provider-reported workflow in gathering and documenting FHH, clinician attitudes toward FHH, and gaps in integrating FHH into everyday clinical decision-making.

MATERIALS AND METHODS

Overview and design

This report used a 2-phase qualitative approach to identify how FHH is collected and used among primary and specialty intendance providers at University of Utah Health (UUH). In phase i, our squad administered an oral survey to outpatient clinicians at their respective clinics, assessing their workflow for collecting and using FHH information. In stage 2, semi-structured interviews were conducted to expand on issues raised in phase 1, including providers' methods for collecting and using FHH, approaches to coordinating care with genetics counselors, and strategies for integrating FHH into intendance planning.

Participants and setting

In phase 1, medical assistants (MAs) and principal care providers at 10 clinics within UUH were interviewed during on-site visits using a standardized questionnaire designed to address workflow patterns. Xix male and 21 female person physicians agreed to participate, although some participants did not respond all of the survey questions. All surveys were administered orally in a 1:1 context without audio recording. For each dispensary, researchers reached an estimated ninety% of those working on that twenty-four hours. Respondents averaged 12.33 years of clinical feel (sd = 9.87) and vii.62 years of clinical experience in UUH (sd = vi.86).Ten (25%) were anile betwixt xviii and 24 years, eleven (27.5%) were aged between 25 and 34 years, 13 (32.v%) were anile between 35 and 44 years, and 6 (fifteen%) were aged between 55 and 64 years.

In stage two, semi-structured oral interviews were conducted and digitally recorded with 12 additional providers at iv of the targeted clinics within UUH. Providers averaged fifteen.8 years of clinical experience (sd = x.77). Convenience sampling was used, with researchers attempting to collect data from a range of specialties available at each location. Respondents included 4 providers in family medicine, 5 in internal medicine, 2 obstetric/gynecologist, and i mental wellness.

Instruments

In phase 1, a survey questionnaire was developed and piloted extensively to support FHH data gathering at each clinic site. It included questions about physicians' demographics, FHH drove patterns, FHH data types, timing of FHH data collection, and documentation patterns across different roles. The survey focused on highly prevalent cancers with hereditary risk for which there are actionable recommendations from evidence-based genetic screening guidelines based on FHH. The questionnaire is provided in Supplementary Appendix SA. In phase ii, semi-structured interviews were conducted and digitally recorded to gain more insight about providers' attitudes toward and practices with FHH. Interview blueprint was based on the findings of the phase 1 survey. Interview questions are listed in Supplementary Appendix SB.

Procedures

In phase ane, each clinic was visited by the research grouping (three–6 individuals) for approximately 2 h. Providers and staff were approached individually with the goal of achieving a loftier response charge per unit with the minimal amount of burden. Stage 1 questionnaires were administered orally with responses recorded on paper, taking roughly 5–x min. Phase 2 interviews were conducted on a clinic-by-dispensary basis, every bit was done in stage 1. Interviews took 15 min and were digitally recorded and transcribed by a private transcription service.

Analysis

Phase one questionnaire responses were recorded in Microsoft Excel. Phase 2 analysis of the semi-structured interview transcripts used an inductive process to developing a coding protocol equally recommended by Patton (2002). 31 Two investigators independently coded each transcript using an initial set of categories derived from stage ane surveys. These categories related to value of FHH, timing of collection, usefulness, decision-making responsibilities, and methods of documentation. A trained anthropologist applied codes to quotations post-obit procedures recommended by Patton. 31 The grouping met, reread the transcripts, discussed the last coding scheme, and so organized quotations in Atlas.ti. The resulting codebook can be found in Supplementary Appendix SC. To maintain rigor and validity, four features of trustworthiness were given careful attention. First, a third party reviewed the coding to ensure confirmability. Second, findings beyond sites were examined for consistency to ensure transferability. Third, credibility of findings was checked past verification of assay with clinicians on the research team. Fourth, the study sought to ensure dependability of findings through thorough documentation of the research process and belittling tools used. 32 , 33

RESULTS

The study produced 2 sets of results: (1) survey results regarding workflow patterns and (2) qualitative themes derived from semi-structured interviews. Both sets of results are discussed beneath.

Survey results: practice and workflow patterns

Table ane summarizes results of the provider questionnaire and is divided into four parts: FHH collection methods, timing, location, and human relationship with genetic services. Part A presents the method of FHH data collection reported by providers. One clinic (n = 6 providers) reported mailing patients a form to fill out prior to their visit. MAs would and so scan the form and store as a PDF file or enter data directly into the FHH section of the EHR, either earlier or after the provider reviewed it. Providers across all clinics reported occasionally reviewing data collected by patients through MyChart® (UUH'southward patient-facing portal). This practice is increasing. Some providers also reported entering information themselves after reviewing the newspaper form or FHH information from MyChart.

Table 1.

Provider survey responses regarding method and timing of FHH collection, documentation location in the EHR, and human relationship with genetic services a

A. Method of FHH collection # (%)
 Prior to visit with a paper form, scanned or entered manually by MA (due north = 36) 6 (17)
 Entered prior by patient into MyChart (n = 36) 4 (11)
 Collected by MA at intake (n = 36) 29 (70)
 Collected by provider only during visit (n = 36) 10 (17)
B. Timing of FHH collection b
 Never or rarely at whatsoever visit (north = 37) x (27)
 At first and annual, rarely at acute visits (northward = 37) 2 (5)
 Every acute visit (n = 37) 23 (62)
C. FHH documentation location
 FHH module in EHR 39 (100)
 Document in problem list (n = 29) 22 (76)
 Document in progress notes (n = 37) 7 (26)
D. Human relationship with genetic services
 Likely to refer to geneticists (n = 38) 35 (92)
 Prefer to be notified of patients' genetic risks (n = 27) 26 (90)
A. Method of FHH collection # (%)
 Prior to visit with a paper form, scanned or entered manually by MA (n = 36) 6 (17)
 Entered prior by patient into MyChart (n = 36) four (11)
 Collected by MA at intake (n = 36) 29 (70)
 Collected by provider only during visit (n = 36) 10 (17)
B. Timing of FHH collection b
 Never or rarely at any visit (n = 37) 10 (27)
 At commencement and almanac, rarely at acute visits (n = 37) ii (5)
 Every acute visit (n = 37) 23 (62)
C. FHH documentation location
 FHH module in EHR 39 (100)
 Document in problem list (n = 29) 22 (76)
 Document in progress notes (n = 37) 7 (26)
D. Relationship with genetic services
 Likely to refer to geneticists (n = 38) 35 (92)
 Prefer to be notified of patients' genetic risks (n = 27) 26 (xc)

Abbreviations: EHR: electronic health record; FHH: family health history; MA: medical assistant.

a

Parts A, C, and D of the table report results for questions in which providers were asked to check all responses that applied to them.

b

Role B does not sum to 100% due to incomplete survey responses.

Table 1.

Provider survey responses regarding method and timing of FHH collection, documentation location in the EHR, and relationship with genetic services a

A. Method of FHH collection # (%)
 Prior to visit with a paper form, scanned or entered manually by MA (n = 36) half-dozen (17)
 Entered prior by patient into MyChart (n = 36) 4 (11)
 Nerveless by MA at intake (n = 36) 29 (70)
 Collected past provider only during visit (northward = 36) 10 (17)
B. Timing of FHH drove b
 Never or rarely at any visit (northward = 37) 10 (27)
 At commencement and annual, rarely at acute visits (northward = 37) 2 (5)
 Every acute visit (n = 37) 23 (62)
C. FHH documentation location
 FHH module in EHR 39 (100)
 Document in problem listing (n = 29) 22 (76)
 Document in progress notes (n = 37) 7 (26)
D. Relationship with genetic services
 Likely to refer to geneticists (n = 38) 35 (92)
 Prefer to be notified of patients' genetic risks (n = 27) 26 (xc)
A. Method of FHH collection # (%)
 Prior to visit with a paper form, scanned or entered manually by MA (n = 36) half dozen (17)
 Entered prior past patient into MyChart (north = 36) iv (11)
 Collected by MA at intake (due north = 36) 29 (70)
 Collected by provider simply during visit (n = 36) 10 (17)
B. Timing of FHH collection b
 Never or rarely at any visit (n = 37) x (27)
 At first and almanac, rarely at acute visits (northward = 37) two (5)
 Every astute visit (n = 37) 23 (62)
C. FHH documentation location
 FHH module in EHR 39 (100)
 Document in trouble listing (n = 29) 22 (76)
 Certificate in progress notes (north = 37) 7 (26)
D. Human relationship with genetic services
 Likely to refer to geneticists (n = 38) 35 (92)
 Adopt to be notified of patients' genetic risks (n = 27) 26 (xc)

Abbreviations: EHR: electronic health record; FHH: family health history; MA: medical assistant.

a

Parts A, C, and D of the table report results for questions in which providers were asked to check all responses that applied to them.

b

Part B does not sum to 100% due to incomplete survey responses.

Office B presents the timing of FHH collection. Nosotros identified 3 distinct patterns. First, some providers reported that they practise non collect FHH systematically at any of their visits. Rather, they assess FHH simply if it is highly relevant to the reason for visit. 2d, some providers reported regularly collecting FHH data at the get-go visit and at the annual regular check-ups, but not at any other acute care visits. A final group of providers reported reviewing FHH at every visit, if but as a matter of routine.

Function C reports where providers record or certificate FHH data. Well-nigh providers turned to the EHR'southward defended FHH module to review. Yet, many providers entered FHH in the EHR's trouble list to prompt themselves to review information technology, or in progress notes to prompt discussion with the patient. This upshot is examined in greater depth in Theme 2 of the qualitative results.

Part D presents findings related to providers' referral patterns with genetic services. The vast majority of providers expressed a willingness to refer to genetic services, and a want to receive feedback regarding their patients' genetic risk factors.

The specific blazon of FHH data nerveless varied less. If FHH was collected at all, providers and MAs consistently documented all cancers covered in our survey. The bulk of providers reported "always" taking family histories of breast, colon, and ovarian cancers from their patients (see Figure 1). In general, providers completed the default list of diseases provided in the FHH module unless they worked in a specific specialty.

Figure 1.

Provider-reported frequency of family health history collection by cancer type.

Provider-reported frequency of family health history drove by cancer type.

Figure 1.

Provider-reported frequency of family health history collection by cancer type.

Provider-reported frequency of family health history collection past cancer type.

Qualitative interview themes

Three themes emerged related to provider appointment with FHH in their typical clinical practice: (1) Strategies for collecting FHH vary past level of endeavor; (2) Documentation practices extend beyond the EHR's defended FHH module; and (three) Providers desire feedback from genetic services consultation and are uncertain how to refer patients to genetic services. The iii themes are discussed below.

Theme 1: Strategies for collecting FHH vary by level of endeavor

Physicians must intentionally process FHH in the way they meet as most efficient amidst a busy clinical workload. This study identified 3 different strategies referenced past providers in dealing with FHH: (a) "bare minimum" engagement with FHH collection until presentation of symptoms; (b) "agile review" of FHH; and (c) "integration into care processes." These different strategies are ranked in terms of the effort that they demand from a provider.

1a. Bare minimum: Considering MAs usually nerveless FHH at the get-go of the visit or from paper forms brought in past the patient and entered information technology into a dedicated section of the EHR as a routine office of patient intake, providers may never await at the resultant data unless they believe there is a demand. More typically, providers used what this written report referred to every bit a "bare minimum" strategy for collecting FHH. This characteristically involved reviewing FHH on a outset visit, probing primarily for high prevalence diseases with genetic risk factors (see Table 2, quotations i and 2).

Table 2.

Illustrative quotations for qualitative theme (1) Strategies for collecting FHH vary by level of effort

Quotation no. Quotation Qualitative subtheme
i So, the style it works here is near of the family history is collected by the medical assistants before the providers even see the patient… We need to know virtually the cardiac history, stroke, diabetes, cancer. That's my approach to things. I could spend all solar day in the visit trying to gather the sort of intricacies of family history 1a. Bare minimum
2 Well, usually, I ask nearly cancer diagnoses and cardiovascular diseases. Those are the ii major areas that I desire to know nigh and screen for and then I enquire virtually other family illnesses or diseases that they want me to list
3 For example, [the quoted provider uses FHH] if a patient wanted to know whether to aggressively treat blood force per unit area or cholesterol, family unit history tin can sometimes help
4 And then, on an initial patient encounter, we have a health history that the patients fill out. And then there's a section for family wellness history that goes through their firsthand relatives… So the MA volition oft put it in [to the EHR], simply I will also get dorsum through using, specifically when it's a new patient, the form that we have, and if it's not in at that place and so I will put information technology in myself. 1b. Active review
5 I but ask the patient directly, similar during the initial history-taking. When a new patient comes, we usually collect family history. Even if it is already bachelor in the [EHR], we always enquire because perhaps in that location'southward missing information, and so I enter it on the family unit history. I ask commencement-caste relative, that'due south very of import. And sometimes if in that location is familial genetic diseases, I would besides enquire second degree
6 I practise a lot of consultations for thrombosis, near all new patients that are consultations, then I put the text of the family history that I think is pertinent into the annotation body itself 1c. Integration into intendance processes
Quotation no. Quotation Qualitative subtheme
ane And so, the mode it works here is most of the family history is collected by the medical administration before the providers even see the patient… We demand to know about the cardiac history, stroke, diabetes, cancer. That'southward my arroyo to things. I could spend all day in the visit trying to get together the sort of intricacies of family history 1a. Blank minimum
ii Well, commonly, I ask well-nigh cancer diagnoses and cardiovascular diseases. Those are the 2 major areas that I want to know about and screen for and so I ask about other family illnesses or diseases that they want me to list
three For example, [the quoted provider uses FHH] if a patient wanted to know whether to aggressively treat blood pressure or cholesterol, family history tin can sometimes help
4 So, on an initial patient encounter, nosotros have a health history that the patients fill up out. So there's a section for family health history that goes through their immediate relatives… So the MA will often put it in [to the EHR], but I will also go dorsum through using, specifically when it'southward a new patient, the form that we take, and if it's non in at that place then I will put it in myself. 1b. Active review
5 I only ask the patient directly, like during the initial history-taking. When a new patient comes, we usually collect family history. Even if it is already bachelor in the [EHR], we always inquire because maybe in that location's missing information, so I enter it on the family history. I ask outset-degree relative, that'south very important. And sometimes if in that location is familial genetic diseases, I would also ask second caste
vi I practice a lot of consultations for thrombosis, almost all new patients that are consultations, so I put the text of the family history that I think is pertinent into the note torso itself 1c. Integration into care processes

Abbreviations: EHR: electronic wellness record; FHH: family unit health history; MA: medical assistant.

Tabular array 2.

Illustrative quotations for qualitative theme (1) Strategies for collecting FHH vary by level of effort

Quotation no. Quotation Qualitative subtheme
1 So, the manner it works here is most of the family unit history is collected past the medical administration earlier the providers even see the patient… Nosotros demand to know virtually the cardiac history, stroke, diabetes, cancer. That's my approach to things. I could spend all day in the visit trying to assemble the sort of intricacies of family history 1a. Bare minimum
2 Well, usually, I ask about cancer diagnoses and cardiovascular diseases. Those are the two major areas that I want to know virtually and screen for and so I enquire virtually other family illnesses or diseases that they want me to listing
iii For example, [the quoted provider uses FHH] if a patient wanted to know whether to aggressively treat blood pressure or cholesterol, family history can sometimes help
4 And so, on an initial patient run into, we have a health history that the patients fill out. So in that location's a section for family health history that goes through their immediate relatives… So the MA volition often put it in [to the EHR], but I will besides go dorsum through using, specifically when it'southward a new patient, the form that we have, and if it's not in there and so I will put it in myself. 1b. Active review
five I but enquire the patient directly, like during the initial history-taking. When a new patient comes, we commonly collect family history. Even if it is already available in the [EHR], nosotros always enquire because peradventure there's missing information, and and then I enter it on the family history. I ask showtime-degree relative, that'due south very of import. And sometimes if there is familial genetic diseases, I would as well enquire second degree
6 I do a lot of consultations for thrombosis, nigh all new patients that are consultations, so I put the text of the family history that I think is pertinent into the note torso itself 1c. Integration into care processes
Quotation no. Quotation Qualitative subtheme
1 So, the manner it works here is most of the family unit history is nerveless by the medical assistants earlier the providers fifty-fifty encounter the patient… Nosotros demand to know almost the cardiac history, stroke, diabetes, cancer. That's my approach to things. I could spend all day in the visit trying to gather the sort of intricacies of family history 1a. Bare minimum
two Well, commonly, I ask nearly cancer diagnoses and cardiovascular diseases. Those are the two major areas that I want to know about and screen for and and so I ask about other family unit illnesses or diseases that they want me to list
3 For example, [the quoted provider uses FHH] if a patient wanted to know whether to aggressively care for claret pressure or cholesterol, family history can sometimes help
4 So, on an initial patient encounter, we have a health history that the patients fill out. Then at that place's a section for family wellness history that goes through their immediate relatives… And then the MA will oftentimes put it in [to the EHR], but I volition also go back through using, specifically when information technology's a new patient, the form that we have, and if it's not in there and then I will put it in myself. 1b. Active review
5 I but ask the patient directly, like during the initial history-taking. When a new patient comes, nosotros usually collect family history. Fifty-fifty if information technology is already available in the [EHR], we always ask considering maybe there's missing data, and so I enter it on the family unit history. I ask first-degree relative, that's very important. And sometimes if in that location is familial genetic diseases, I would also enquire 2nd degree
6 I do a lot of consultations for thrombosis, about all new patients that are consultations, so I put the text of the family history that I think is pertinent into the note body itself 1c. Integration into care processes

Abbreviations: EHR: electronic wellness record; FHH: family unit health history; MA: medical banana.

Pursuing this strategy is likely to involve probing patients for further information nearly FHH just when prompted by a patient's complaint or when that complaint seems symptomatic of a disease with well-known genetic risk factors. Probing involves considerable time and effort (encounter Table 2, quotation 3). Thus the "bare minimum" appointment strategy involves little reference to FHH afterward its drove on an initial visit. Hereafter attention would crave an update by the patient on subsequent visits or be triggered past a complaint. This pattern was also observed during the formal survey (about 25%, as noted in Table 1).

1b. Active review: A second strategy of "active review" was referenced by a number of physicians, focused on reviewing FHH in the EHR for its thoroughness and accuracy equally part of the new patient or annual visits. In this instance, FHH would exist a "topic heading" in a visit and formally addressed during visits. Providers using this strategy deliberately revised or checked the thoroughness of information entered by MAs (come across Table two, quotations 4 and five).

1c. Integration into care processes: The tertiary strategy of "integration into care processes" was used in a much more limited fashion among the interviewed providers. It involved more labor- and time-intensive efforts to comprise FHH into treatment plans for patients for whom this information was probable to be especially valuable. Providers reported recommending that patients make boosted efforts to collect FHH, for example, past collecting FHH from family members. Some providers described actively seeking out FHH for patients with diseases with known genetic risk factors and incorporating relevant details into the patient's record beyond the FHH module during preparation for a visit (run across Table 2, quotation 6).

Theme 2: Documentation practices extend beyond the EHR'south dedicated FHH module

While the EHR used by UUH (Epic®) has a dedicated FHH module, documenting FHH outside of that module was a commonly reported practice amongst the interviewed providers. Some providers reported documenting FHH straight into their notes when updating a patient's data without using the FHH module (meet Tabular array 3, quotation ane). Others described deliberately moving FHH collected past MAs in the dedicated FHH module into their problem list or note (run across Table 3, quotation two).

Table 3.

Illustrative quotations for qualitative theme (2) Documentation practices extend beyond the EHR'south dedicated family health history module

Quotation no. Quotation
1 [T]here may exist times when I do go some sort of history, and I don't terminate upwardly documenting it in the family history. I'll document it in my note, but sometimes it doesn't become translated to the family history
two [I]f in that location'south a family history of something that's going to affect what I'm ordering, then it goes on to the problem list
3 I don't particularly love the way it's set up in [the EHR], because information technology'southward tedious to get back to the rooming department and I don't feel similar that translates very well to the clinic visit, because that'due south non part of what nosotros do every bit providers. Going dorsum in that section very often, those are much more actress steps
4 Me going through trying to discover specific cancers can exist sort of daunting. Again, takes a lot of time, right?
5 I would just say similar… maybe non all the cancers are listed. If I want to say 'melanoma', sometimes I cannot put that. I have to put the 'cancer, pare'. And then next to it on the free texting, I would put 'melanoma', for example
Quotation no. Quotation
one [T]here may exist times when I practise get some sort of history, and I don't end upwardly documenting it in the family history. I'll document information technology in my annotation, merely sometimes information technology doesn't become translated to the family history
2 [I]f there's a family unit history of something that'south going to affect what I'yard ordering, then it goes on to the problem list
iii I don't specially love the way it's set up in [the EHR], considering it's tedious to go back to the rooming section and I don't feel like that translates very well to the clinic visit, because that's not part of what nosotros practise every bit providers. Going back in that section very often, those are much more extra steps
4 Me going through trying to find specific cancers can exist sort of daunting. Over again, takes a lot of time, right?
five I would just say like… perchance not all the cancers are listed. If I desire to say 'melanoma', sometimes I cannot put that. I have to put the 'cancer, skin'. And so side by side to information technology on the costless texting, I would put 'melanoma', for example

Abbreviation: EHR: electronic health record.

Table 3.

Illustrative quotations for qualitative theme (2) Documentation practices extend across the EHR's dedicated family health history module

Quotation no. Quotation
1 [T]here may exist times when I practice get some sort of history, and I don't end up documenting it in the family history. I'll certificate it in my notation, but sometimes information technology doesn't go translated to the family unit history
ii [I]f there'due south a family unit history of something that's going to affect what I'm ordering, then it goes on to the problem list
3 I don't peculiarly dearest the fashion it's set upward in [the EHR], considering it's ho-hum to go back to the rooming department and I don't feel similar that translates very well to the clinic visit, because that's not part of what we do as providers. Going back in that department very oft, those are much more than actress steps
iv Me going through trying to observe specific cancers can be sort of daunting. Again, takes a lot of time, right?
five I would only say like… peradventure non all the cancers are listed. If I desire to say 'melanoma', sometimes I cannot put that. I have to put the 'cancer, skin'. And and then adjacent to it on the costless texting, I would put 'melanoma', for example
Quotation no. Quotation
1 [T]here may be times when I do get some sort of history, and I don't end up documenting it in the family history. I'll document it in my note, but sometimes it doesn't get translated to the family unit history
2 [I]f there's a family unit history of something that'south going to affect what I'm ordering, then it goes on to the problem list
three I don't particularly dearest the way information technology'south set up in [the EHR], considering it'south tedious to go dorsum to the rooming section and I don't feel like that translates very well to the dispensary visit, because that's not part of what we do as providers. Going back in that department very oftentimes, those are much more actress steps
4 Me going through trying to find specific cancers can be sort of daunting. Again, takes a lot of time, right?
five I would just say like… peradventure non all the cancers are listed. If I want to say 'melanoma', sometimes I cannot put that. I have to put the 'cancer, skin'. Then next to information technology on the gratis texting, I would put 'melanoma', for case

Abbreviation: EHR: electronic health tape.

Providers gave a number of dissimilar reasons for their preference for having FHH somewhere other than the dedicated module. FHH is accessible from a unlike section of the EHR than the one typically used by providers during their visits with a patient, requiring providers to navigate through the software to that section, involving boosted effort and clicks. Providers mentioned the insertion of FHH into problem lists or progress notes as a mechanism to remind them to conduct a follow-up, to organize their information gathering, or to monitor progress. 1 provider observed the poor match between EHR design and clinical workflow (see Table 3, quotation 3). The FHH module was also seen as visually chaotic and difficult to utilise (see Tabular array iii, quotation 4). Finally, providers cited limitations with the diagnoses available in menus within the FHH section of the EHR, requiring them to input structured data and gratis text simultaneously (see Table 3 quotation 5).

Theme 3: Providers desire feedback from genetic services consultation and are uncertain how to refer patients to genetic services

Referral to genetic services was typically triggered by presentation of a symptom of a affliction with a genetic risk factor. Obstetricians explicitly mentioned referring in the case of pregnancy. All providers who had referred patients for genetic services expressed a desire for more and higher quality information to be returned from the consult. Genetic services were viewed positively and believed to impact handling or surveillance. Notwithstanding, incertitude nearly how to order such a consult within the EHR or how to communicate well with geneticists resulted in some reluctance to move ahead with a referral. Some providers who referred patients for genetic services indicated a want for more guidance regarding which patients to refer, particularly for less mutual cancers (encounter Table four, quotation 12).

Table 4.

Illustrative quotations for qualitative theme (three) Providers want feedback from genetic services consultation and are uncertain how to refer patients to genetic services

Quotation no. Quotation
12 I'k still not comfy over the optimal kind of patient to refer. Right now, where are you going to get the most bang for your buck? [We demand] referral guidelines. What about pancreatic cancer? Well, I don't know annihilation. Merely with colon, breast, ovarian, I get
13 It'south non even on any of our radar. Just considering it'southward difficult, for ane, to navigate, how to become a patient to that testing, [and so, additionally] cost, does insurance pay for information technology, is it accurate, what's the evidence on information technology? That all right now is sort of—we don't have a lot of current sort of standard of care, right? Information technology would not exist the standard of intendance, currently
Quotation no. Quotation
12 I'k still non comfortable over the optimal kind of patient to refer. Correct now, where are yous going to get the nigh bang for your cadet? [Nosotros need] referral guidelines. What about pancreatic cancer? Well, I don't know anything. But with colon, chest, ovarian, I get
13 It's not even on whatsoever of our radar. Just because it'south hard, for one, to navigate, how to get a patient to that testing, [and and so, additionally] cost, does insurance pay for it, is it accurate, what'due south the evidence on it? That all right now is sort of—nosotros don't take a lot of current sort of standard of intendance, correct? Information technology would not be the standard of care, currently

Table 4.

Illustrative quotations for qualitative theme (three) Providers desire feedback from genetic services consultation and are uncertain how to refer patients to genetic services

Quotation no. Quotation
12 I'k all the same not comfortable over the optimal kind of patient to refer. Right now, where are you going to get the about bang for your buck? [Nosotros need] referral guidelines. What about pancreatic cancer? Well, I don't know anything. Only with colon, chest, ovarian, I go
13 It's non even on any of our radar. Just because it's difficult, for one, to navigate, how to become a patient to that testing, [so, additionally] cost, does insurance pay for information technology, is it authentic, what's the evidence on it? That all right now is sort of—we don't have a lot of current sort of standard of intendance, right? It would not be the standard of care, currently
Quotation no. Quotation
12 I'm still non comfortable over the optimal kind of patient to refer. Right now, where are yous going to go the well-nigh bang for your buck? [We need] referral guidelines. What about pancreatic cancer? Well, I don't know anything. But with colon, chest, ovarian, I get
13 It'south not even on any of our radar. Just because it's difficult, for one, to navigate, how to go a patient to that testing, [and and so, additionally] cost, does insurance pay for it, is it authentic, what's the evidence on information technology? That all right now is sort of—we don't take a lot of current sort of standard of intendance, right? Information technology would not be the standard of care, currently

Finally, providers also indicated lack of clarity regarding how to translate or employ the results of genetic screening in their clinical do. For example, 1 provider indicated an unwillingness to use genetic services to place genetic bases for treatment ineffectiveness (see Tabular array 4, quotation 13).

Discussion

The multifariousness of providers' approaches to FHH identified in our survey and qualitative results reflects the intrinsic complexity of integrating FHH into practice. Informatics tools similar the EHR's FHH module appear to be gaining adoption, in that more patients are being assessed at their initial visit. 34 Workflow patterns we identified include paper forms completed past patients, MyChart information completed by patients, data input by MAs, and straight data input by physicians. The patterns are diverse across clinics (though more homogeneous inside clinics), suggesting a struggle to find an "easy path" for inputting FHH data, even with a defended EHR module.

The "bare minimum" FHH collection strategy by clinicians is significant considering it suggests that some providers are skeptical of how useful FHH data is for regular patient care. In contrast to some existing work, 24 this study found that providers were supportive of collecting FHH history, but several were skeptical of how this information would be useful in direct clinical intendance when there was no related illness or symptom. Physicians unremarkably appear to use heuristics to engage with FHH such that family histories of diseases with well-known genetic risk factors are the main or simply trigger for collecting further information. In other words, FHH is routinely collected on mutual diseases with footling differentiation based on clinical do domain, the relative importance of genetic history (eg, ovarian cancer should crave immediate genetic counseling), patient's racial background, or other family history.

Both the survey and interview results of our report indicate providers' practices for collecting and using FHH are non fully supported by the existing software. Blueprint limitations are visible in the diversity of patterns of use. The FHH module is difficult to access and does not support easy coordination with genetic services. Moreover, information technology provides piffling support for making complex decisions, such as referral or patient instruction. The observed lack of integration of suitable determination support tools for FHH in the EHR may impede accurate FHH drove and upshot in underutilization of FHH by primary care providers. 35 The system itself does non link to progress notes or the problem list, and therefore is suboptimal as a documentation tool that tin can exist integrated into care. As it stands, users currently engage in a mix of free-text and structured data entry, but practice not do good from the clinical determination support (CDS) that structured information should theoretically support.

Some enquiry has evaluated user satisfaction with FHH EHR modules and shown positive ratings (eg, Wu et al). 36 Withal, assessments have been limited to satisfaction with documentation usability of the systems, with limited focus on the caste to which decisions are supported. 8 Zazove et al 37 reported a study that provided electronic alerts for patients at risk and showed no alter in behavior. Increasing direct patient input via a patient portal and using MAs more may assistance with workflow burden. Identifying and contacting at-run a risk patients through automatic EHR screening (as is being investigated in the larger study supporting this work) volition help providers to use FHH. Our findings converge with many existing studies showing the difficulties in collecting and acting on FHH. 7 , 17 , 19 , 22 , 34

As new genomic technologies become available, it is expected that an increase in novel pathogenic variants previously not identified will exist discovered. Knowing more nigh the linkage between these new germline pathogenic variants and FHH may help to identify new cancer syndromes linked to patterns of specific cancer diagnoses in families. This knowledge volition increase the clinician's ability to identify at-risk family members prior to diagnosis. As a result, FHH screening has the potential to become more targeted. Designing tools that tin can keep pace with these changes is a meaning challenge. It is hoped that lowering the barriers to user adoption volition pb to more targeted decision support that minimizes over-diagnosis and interruption to workflow as the recognition of previously undiagnosed hereditary cancer syndromes increases. As always, there volition be a minor just measurable risk of over-diagnosing based on clinical data. This is why we suggest that presumed hereditary syndromes should e'er be confirmed with Clinical Laboratory Improvement Human action-compliant genetic tests.

To date, the express work on FHH-based CDS for personalized medicine has been focused primarily on standalone tools. 17 , 38–40 Coming together the loftier bar of iii generation pedigrees that are desirable from an oncological perspective will crave conscientious workflow considerations, including EHR integration, every bit well every bit better documentation tools, including tools that engage the patient in the procedure. Integrating patient-entered FHH collected via EHR-integrated questionnaires prior to visits may improve FHH accuracy (as patients accept fourth dimension to ask their relatives for needed data), optimize the use of fourth dimension during clinic visits, and decrease provider documentation time. 19 While some healthcare settings, including UUH, already employ patient-facing tools with promising results, 25 , 41 , 42 this remains an emerging area that should be informed by detailed enquiry on extant provider practices. 17 , xix , 43 Nosotros suggest that the design of standards for FHH collection will be central to making FHH usable for clinicians. Automatic screening algorithms, such every bit those designed by the larger project supporting this research, volition likely play a office in reducing over-diagnosis and efficiently targeting high-gamble patients. 20

Limitations

This study did not compare provider accounts of FHH documentation and module use with EHR data, although our interview data betoken that a narrow focus on FHH module use would miss much provider engagement with FHH data. 44 Additionally, the study used a convenience sample of providers in one health arrangement who use i EHR in their daily practice. Equally such, report results may not generalize to all healthcare settings, specialties, and EHR systems. Furthermore, the study did not explicitly prompt providers to address all avenues for inputting FHH into the EHR (eg, patient-entered information, clinical notes) or other types of information relevant for the assessment of heritable affliction, focusing instead on structured and complimentary text input through a dedicated FHH section. Nevertheless, the study provides a detailed analysis of existing behaviors and attitudes effectually FHH data collection and use that can inform futurity tool pattern to more than accurately capture and more effectively use FHH.

Decision

This study demonstrates that the availability of FHH documentation tools is not sufficient to ensure effective use of that information to support clinical decision-making. The pregnant variability in the types of information gathered by providers, their strategies for collecting FHH, their use of the EHR to document FHH, and their attitudes or concerns about referring patients for genetics services indicate that FHH modules demand more than integration. All of these themes suggest the need to rethink and redesign FHH documentation tools inside the EHR and to improve coordination between genetic services and principal care providers. Improved FHH tools may facilitate better access to cancer genetics providers for appropriate testing, the extension of care to boosted family members, and timely initiation of surveillance and handling strategies. 29 , 45 , 46

FUNDING

This work was supported past grant number i U24 CA204800-01 from the National Cancer Institutes of Health. PT is supported as a VA Office of Academic Affiliations Mail-Doctoral Beau in Medical Informatics at the VA Salt Lake City Health Intendance Organisation. The contents of this article do not represent the views of the Department of Veterans Affairs or the United States Government.

AUTHOR CONTRIBUTIONS

PT: Information collection, writing, editing, qualitative interview blueprint, coding, and analysis. PG: Data collection, qualitative interview blueprint, coding, and analysis. JDS: Study design, analysis, and manuscript review. WK: Study design, analysis, and manuscript review. RH: Study design, analysis, and manuscript review. VC: Study blueprint, data collection, assay, and manuscript review. KK: Study design, analysis, and manuscript review. RGW: Study design, data collection, and manuscript review. DB: Study blueprint, data collection, analysis, and manuscript review. GDF: Written report pattern, analysis, and manuscript review. CW: Survey design, composition, qualitative coding, data collection, manuscript writing and editing.

SUPPLEMENTARY MATERIAL

Supplementary cloth is bachelor at Journal of the American Medical Informatics Clan online.

CONFLICT OF Interest STATEMENT

None declared.

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