Eliciting stakeholder preferences for patient-centered research

Figures & data

Figure 1 Participant recruitment and enrollment process of 26 Beth Israel Deaconess Medical Center physicians and 76 Health care Associate patients from January to July 2017.

Table 1 Characteristics of 102 patient and physician study participants from January–July 2017, mean ± standard deviation or n (%)

	Physicians (n=26)	Patients (n=76)	All (n=102)
Age (years)	48.0±9.3	54.4±15.1	52.8±14.1
Women	11 (42.3%)	57 (75.0%)	68 (66.7%)
Ethnicity
Not Hispanic or Latino	22 (84.6%)	69 (90.8%)	91 (89.2%)
Hispanic or Latino	4 (15.4%)	7 (9.2%)	11 (10.8%)
Race
American Indian/Alaska Native	0	1 (1.3%)	1 (1.0%)
Asian	4 (15.4%)	4 (5.3%)	8 (7.8%)
Black or African American	1 (3.8%)	10 (13.2%)	11 (10.8%)
White	21 (80.8%)	57 (75.0%)	78 (76.5%)
More than one race	0	1 (1.3%)	1 (1.0%)
Unknown/not reported	0	3 (3.9%)	3 (2.9%)
Highest level of education
Less than high school	0	1 (1.3%)	1 (1.0%)
High school graduate, diploma or equivalent (GED)	0	3 (3.9%)	3 (2.9%)
Some college credit, no degree	0	9 (11.8%)	9 (8.8%)
Trade/technical/vocational training	0	2 (2.6%)	2 (2.0%)
College graduate	0	28 (36.8%)	28 (27.5%)
Advanced degree	26 (100.0%)	33 (43.4%)	59 (57.8%)
Occupation
Medical doctor, hospitalist	12 (46.2%)	0 (0.0%)	12 (11.8%)
Medical doctor, medical	9 (34.6%)	0 (0.0%)	9 (8.8%)
Medical doctor, surgical	5 (19.2%)	0 (0.0%)	5 (4.9%)
Professional/executive/supervisory/technical		37 (48.7%)	37 (36.3%)
Retired		20 (26.3%)	20 (19.6%)
Sales, homemaker, self-employed, clerical		9 (11.8%)	9 (8.8%)
Unemployed		5 (6.6%)	5 (4.9%)
Laborer		3 (3.9%)	3 (2.9%)
Student		1 (1.3%)	1 (1.0%)
Unspecified		1 (1.3%)	1 (1.0%)

Abbreviation: GED, general educational development.

Table 2 Commonly reported exposures and outcomes of interest

Physician (n=82 suggestions)	Patient (n=239 suggestions)	All (n=321 suggestions)	Physician (n=82 suggestions)
Exposures of interest
Medication changes and interactions	25 (30.5%)	48 (20.1%)	73 (22.7%)
Surgery and other invasive procedures	16 (19.5%)	50 (20.9%)	66 (20.6%)
Hospital acquired infection	2 (2.4%)	52 (21.8%)	54 (16.8%)
Medication error	4 (4.9%)	30 (12.6%)	34 (10.6%)
Lines, catheters, and needles	10 (12.2%)	10 (4.2%)	20 (6.2%)
Hand hygiene	1 (1.2%)	14 (5.9%)	15 (4.7%)
Falls	4 (4.9%)	7 (2.9%)	11 (3.4%)
Communication	2 (2.4%)	5 (2.1%)	7 (2.2%)
Wrong site/side surgery	0	5 (2.1%)	5 (1.6%)
Clotting/bleeding	2 (2.4%)	2 (0.8%)	4 (1.2%)
Lung complication/respiratory arrest	0	4 (1.7%)	4 (1.2%)
Neurological issues	0	4 (1.7%)	4 (1.2%)
Allergic reactiona	0	3 (1.3%)	3 (0.9%)
Ventilator	2 (2.4%)	0	2 (0.6%)
Other	14 (17.1%)	5 (2.1%)	19 (5.9%)
Outcomes of interest
Death	5 (6.1%)	56 (23.4%)	61 (19.0%)
Hospital acquired infection	15 (18.3%)	40 (16.7%)	55 (17.1%)
Allergic reaction	7 (8.5%)	14 (5.9%)	21 (6.5%)
Neurological issues	4 (4.9%)	14 (5.9%)	18 (5.6%)
Bleeding	11 (13.4%)	4 (1.7%)	15 (4.7%)
Prolonged hospital stay	2 (2.4%)	13 (5.4%)	15 (4.7%)
Surgery and other invasive procedures	1 (1.2%)	13 (5.4%)	14 (4.4%)
Lung complication/respiratory arrest	8 (9.8%)	5 (2.1%)	13 (4.0%)
Cardiovascular disease	4 (4.9%)	6 (2.5%)	10 (3.1%)
Acute kidney injury	5 (6.1%)	4 (1.7%)	9 (2.8%)
Amputation and limb ischemia	0	9 (3.8%)	9 (2.8%)
Falls	0	9 (3.8%)	9 (2.8%)
Clotting	4 (4.9%)	2 (0.8%)	6 (1.9%)
Hospital acquired pneumonia	3 (3.7%)	3 (1.3%)	6 (1.9%)
Multiple organ failure	3 (3.7%)	3 (1.3%)	6 (1.9%)
Sepsis	1 (1.2%)	5 (2.1%)	6 (1.9%)
Blood pressure regulation	2 (2.4%)	2 (0.8%)	4 (1.2%)
Blood sugar regulation	1 (1.2%)	3 (1.3%)	4 (1.2%)
Liver issues	1 (1.2%)	3 (1.3%)	4 (1.2%)
Pain	0	4 (1.7%)	4 (1.2%)
Medication changes and interactions	1 (1.2%)	2 (0.8%)	3 (0.9%)
Psychological distress	1 (1.2%)	2 (0.8%)	3 (0.9%)
Wrong site/side surgery	0	3 (1.3%)	3 (0.9%)
Gastrointestinal complications	0	2 (0.8%)	2 (0.6%)
Readmission	0	2 (0.8%)	2 (0.6%)
Surgical complication	0	2 (0.8%)	2 (0.6%)
Other	3 (3.7%)	14 (5.9%)	17 (5.3%)

Note:

a Some participants suggested allergic reaction as an exposure that may result in higher risk of in-hospital mortality.

Table 3 Themes and representative quotes that emerged from stakeholder interviews

Themes	Representative quotes
	Patients	Physicians
Information transfer	“Not knowing all the information before you come in and you wake up from surgery and it’s a totally different outcome than what you expected, that could be traumatizing if you’re not given all that information. Or not given all the information of how you’re going to recover.” “It’s a good setting for your primary care giver to explain to you things and you could have the results right away to give to your patients and any other kind of advice that your doctor could give you is right there and then.”	“I think for patients its extremely jarring for patients when they feel like teams aren’t working together, even seem like they communicate with each other, and there’s a disconnected plan or even a contradictory plan which happens all the time.” “Language barriers, whether that requires intermediaries and different resources in a resource-constrained environment when you do not have time.”
Processes of care	“The anesthesiologist has to be very good and pay attention to what they’re doing. It could be the tools they’re using that aren’t sterile in the surgery or it could just be a plain old mistake that they make, you know?” “I think the monitoring, I mentioned this before, but I’m really impressed with the nursing centers and the ongoing monitoring of vital signs.” “Sometimes you know because of a fault by the prescribing practitioner or nurses maybe they gave wrong medications.”	“Well, things can definitely go wrong, you know. You have a complication during the surgery, during the surgery or post- operative. You know, maybe there was an accidental laceration of something or uncontrolled bleeding or interoperative hypertension. And then post-op, people get infections.” “… not getting an antibiotic if one provider forgets to relay that to someone else who, you know is providing it to the patient.” “Yeah, so … my particular pet peeve is transfers of care, lack of continuity in overall care of the patient.” “Sometimes you know when the system is not set up right …”
Provider skills and	“Well maybe wrong medication given to a patient.	“I think you know, supervising a resident doing a central line
knowledge	Sometimes you know because of a fault by the prescribing practitioner or nurses maybe they gave wrong medications.”	could cause a pneumothorax or you know a carotid artery puncture for example.” “I would not be surprised if that still occurs because part of that depends on you knowing the name of the agent and some house staff do not. They think they do but they actually do not.” “There’s no expert that can do this and it falls on who’s on call that day and it could happen that they haven’t done that procedure since 20 years ago.”
Proposing solutions	“I do not know what the protocol could be to help improve that because being on the cost side is to try to be the least invasive as possible to see how that could be … lead to the other … multiple surgeries.”	“I mean there’s actually really interesting studies in the past couple of years about the influence of rudeness on a team’s performance.”
Respect	“And I always come to them with intellect and be honest about my condition and they respect that and are great doctors so as a patient I can expect this at any point they can explain but there aren’t any … I go there expecting to be treated well and then I do, I do and I am … Also if the patient’s privacy is not honored because you could hear some nurses or some other practitioner talking about your condition to other people about your consent maybe.”	“The best experience for a patient will occur when individuals are really caring … So I think for patients feeling really heard and working with doctors and nurses who really make an effort to develop a sense of trust and communicating clearly between team members is going to give the patient the better experience.” “But you know, good exposures are kind of the absence of bad exposures plus respect, dignity, comfort, clarity, precision.”
Support and relationships	“… the care and the attention of the caregivers …” “… or the family members are not being involved in the care and some of the elderly patients sometimes get agitated…on top of the new environment and the cultural differences and the language barriers so it has some bad effect on the patient.”	“I think it’s very hard to understand how to care for someone if you never knew them well.”
Normalizing risk	“Mistakes are made but not intentionally.”	“I think there are some known rate of complications from surgeries that are going to occur no matter how careful we try to be.” “Nobody obviously meant for that to happen.”

Table S1 Exposures and outcomes during a hospital stay and ranking of perceived importance

Exposure	Outcome	Rank