Student-accessible healthcare records: A mixed-methods study of college student and provider

Phase I: qualitative interviews

Provider participants were recruited from the student health service centers (SHS) at four public universities in Eastern Massachusetts. An e-mail was sent to clinic directors at these institutions to inform them of the study and invite them and their providers to participate in the interviews either in-person or by phone. Snowball recruitment methods were used to recruit additional providers.

Student participants were recruited from only one of the four public universities. Flyers were posted on campus, and a mass e-mail announcement was sent to students with a valid university e-mail address. Students were asked to contact the study office by phone or e-mail if interested in participating. Students were eligible if they were at least 18 years of age, had completed at least one primary care visit to the student health center in the past year, and were currently enrolled full-time at the university.

Phase II: student survey

Student participants were recruited from two of the four public universities. Originally, the study was to take place only at an urban commuter school, XXXa. To gain the perspectives of students at a residential campus, however, an additional public university with campus housing was invited to participate. Students at XXXa were recruited using the same methods as in Phase I, with the addition of an information table set up in the university student center. Students at XXXb were recruited via postings on the university’s website and announcements in the daily university e-mails. All interested students were asked to contact the study office (via e-mail or phone) to receive a unique web address to the online survey. Students were eligible if they were at least 18 years of age and currently enrolled in one of the two universities. Surveys were administered using a secure, web-based application, Research Electronic Data Capture (REDCap). ⁶

In-depth interviews

One of the study investigators (J.W.) conducted interviews with the students, and two trained research assistants interviewed the providers. A semi-structured interview guide was used (see Appendix 1). The interviews were designed to elicit attitudes and expectations about open notes.

Student survey

The online survey was designed to take about 15 min to complete. Questions about age, college enrollment, and healthcare utilization were assessed. Only respondents defined as “users,” those who reported at least two healthcare visits to any healthcare provider at any health center or at least one visit to SHS (excluding immunization visits) in the previous 12 months, answered questions to assess attitudes and expectations about open notes (see Appendix 1). All others, defined as “non-users,” were not asked about open notes.

The survey included questions from the original OpenNotes survey.^3,7 The questionnaire was used to measure how reading visit notes might affect the respondent. Students were asked whether they disagreed or agreed with each of 16 statements. The stem for each item was, “If I could read my doctor’s visit notes on a secure website,” for example, “I would understand more about my health and medical conditions”—A 5-point Likert response from disagree to agree plus the option of “I don’t know.” This scale was originally developed using qualitative methods to generate item content, face validity evaluation, and cognitive testing of the final survey to ensure that patients understood the meaning and intent of each question. The development of the OpenNotes survey is described elsewhere.^3,7 The introduction to the scale was modified slightly to define doctor as either doctor or nurse practitioner (NP).

Qualitative data analysis

Qualitative analyses, including manual data reduction, data display, and data interpretation, were conducted using methods described by Farzanfar. ⁸ Recordings of five of the six provider interviews were transcribed by a research team member. Recording was unavailable for one interview, and analyses were conducted using interviewer notes. One team member acted as lead coder for the provider interviews and the student interviews. These coders read the transcripts, highlighted and took notes about emerging themes, created a code book, and extracted text that represented themes and categories. Another team member was trained by the lead coders to use the code book to extract text from the transcripts that represented the themes and categories. The codes and text fragments were entered into Excel for review and analysis by an investigator, who conferred with the coders about the results until an agreement was reached.

Quantitative data analysis

Descriptive statistical analysis was used for the survey responses including means, modes, and standard deviations for continuous variables, and frequency percentages for categorical variables. Sample proportions were calculated for students who agreed with statements about potential risks and benefits of open notes. ⁷ The categories of “agree” and “somewhat agree” were combined, as were the “disagree” and “somewhat disagree” categories; “don’t know” responses were retained as a separate category and were included in denominators for that questionnaire. ⁷ All analyses were performed in SPSS Statistics for Windows (version 22.0; Armonk, NY, 2011).

Theme 1: communication with students takes time and consideration

A subtheme was that providers use verbal instead of written communication. The providers discuss the treatment plan verbally. While most providers mentioned that there are written patient education materials, it appears that these are not used often:

I have various teaching sheets in my office that I will hand to the student just to reinforce what we talked about, more from an educational standpoint, but no specific written discharge instructions, unless I write them down myself, which I do on occasion. I can’t say 100% of the time.

Additionally, the providers value their interactions with the students and are satisfied with their patient communication. The providers seem to act in ways to protect the patient–provider relationship; for example, most of them take very short notes (e.g. key words) on the EHR or on paper during the visit, then complete the visit notes after the visit, so as to not detract from their time with the patient.

Theme 2: a “one woman show” from educator to navigator to provider

The first subtheme was that providers see their role as being different from other health centers or practices. NPs at student health centers take on many roles. Their approach to care might be different, given all the hats that they wear. NPs do everything at the health center and differentiate it from other types of clinic offices:

… other places have a lot more, um, people doing other things for you. So, you know, like when I go to my primary, … so there is a lot of sort of other stuff that we do. We are sort of like a one man show in a way.

The second subtheme was that providers see themselves as teachers and navigators. The data suggest that providers view themselves as teacher, navigator, and protector of the student. They do things in the visit to help the student navigate the system. They encourage students to obtain their health records upon graduation, teach them about insurance, and they strive to maintain the privacy and security of the student’s data.

The providers see it as a part of their job to teach students about the healthcare system:

So one of the big roles I see fulfilling with this student population is really educating them about the healthcare system, how to use it, how to use it appropriately.

Providers also talked about student patients being a part of the team (“patients really should be partners”) and expressed that they would like to see the students become more engaged (“… it would engage students more in their healthcare process … a positive thing to engage them in their own health care”). There was no discussion, however, about how the providers used this approach (i.e. they did not talk about how they used it during the interview).

Theme 3: uncertainty about student access to health records

Providers expressed worry about providing quality care in a limited amount of time. There was uncertainty about open notes. Two subthemes, advantages and disadvantages, illustrate this wavering. For example, a few providers expressed concerns that open notes could generate more questions. Also, a secure messaging function in the portal could allow the student to type questions, which could allow more time to discuss the main reason for the visit but could also generate more follow-up questions later.

The advantage of open notes would be improved patient–provider communication. It was unanimous that the providers thought access to the notes is a “great thing.” There was, however, less clarity on what the specific advantages might be. As a whole, the advantages were about better patient–provider communication:

I think it, you know, if you really look at it from just a fundamental … improvement, I think it, it can’t be a bad thing. I think for some of our patients to have access to their records and understand … and take some responsibility and … ownership, I think it is a great thing.

There was a general consensus that English language learner (ELL) students would benefit from being able to read a note or e-mail:

It is going to make it easier to communicate with them in e-mail because they can read English better than they can hear or understand or speak it.

The disadvantages of open notes might be the misunderstandings and their negative consequences to providers and patients. Although advantages were discussed, providers had a more unified voice about concerns. Providers were concerned that patients may not understand the medical terminology in their notes. They believed that students will not understand the terms, will have questions, or may become overly concerned. They also wanted to know how students will get those questions answered:

I also would be interested in knowing if they had specific questions about something that was in the note, how would they go about getting those questions answered?

Students’ misunderstandings might have a negative impact on the clinician’s relationship with the student. All providers voiced concerns about possibly offending the patient because of the medical terminology in the note. They mentioned terms (e.g. obese) that could be offensive to some patients given the cultural meanings or render some patients distraught when seeing terms with emotional connections (e.g. abortion, sexual assault, and risky behaviors). The providers were worried about patients not returning to see them or not opening up:

I’d have to be extra careful about, I mean the majority of patients, I don’t think I document anything that would offend them. But … there are instances where you recommend something and the patient doesn’t want to go with that treatment plan, or you spent maybe an extra-long amount of time discussing something you thought should have been quick. You … have got to admit that kind of expense, like 50% of the visit prepping this or patient declined this. I think that is enough that certain people could get offended by and could cause problems between the provider and the patient.

The providers were concerned about how this would impact not only patients but themselves as well. All providers mentioned time as a concern, mostly the time spent answering questions that open notes could generate after a visit. For example,

Right now, to me, it is accountability that I would have to see if I spent all day trying to reply to people, then I would be concerned.

Theme 1: gathering information: web and family first, provider last

Students indicated strongly that they rely on sources other than the provider to manage their own healthcare decisions and information. They use websites as their go-to source of information before and after an appointment. They access the Web for information to help them decide whether they should make an appointment, to help them prepare for the visit, and to improve their understanding of their health:

When they give you the diagnosis, you can also go online and check. If you don’t understand what he is saying, you can say hold on, I need to check this.

Students seek out information from websites or family members, particularly their mothers, to determine what to do about a health issue. They used their sources (Web or family) first, and then go to the provider if necessary:

First source is definitely mother, then I look online, then I usually talk to a doctor.

The students also talked about self-diagnosis prior to seeking medical help, suggesting a reluctance to make appointments and a tendency to attempt to treat health problems by themselves unless absolutely necessary. This approach suggests that students have a general concern about their health and a desire to do something for it:

Whenever I have a problem I usually call, um, for, if I don’t think it is that serious. Sometimes I will go online and try and self-diagnose, and then if I just don’t know …, if I see symptoms that are extreme diseases like cancer, or whatever, I definitely will call and make an appointment.

Theme 2: access provides insight and involvement

The students indicated that being able to view their health records would help them track their health over time and be in control of their health. The students talked about how seeing their medical record could help them analyze and evaluate their health because they would be able to see patterns. These patterns or data could help them make decisions based on what worked in the past:

Because she [healthcare provider] might not verbalize everything she is writing down, so I can see all the records and feel like I have more control.

The students also indicated that viewing the notes would offer them insight into their provider’s recommendation and give them better understanding and would then allow them to be more involved in the treatment plan (e.g. being able to correct communication errors):

… There have been times when I think they have misheard me and wrote something different than what I said down in the notes that I would see and correct at the moment, um, but I don’t know if that is true all of the time. They might be with their back turned and they miss what I say. Um, sometimes I think it helps just to see it, and then I can think, ‘Oh, they recommended because they heard this, but I have this instead,’ so maybe the recommendation would be different if we could all sit down and look at it to make sure it is accurate.

While students liked the idea of having access to their providers’ notes, they were concerned about control over their medical record. The theme that no data are secure arose. Students talked about “hackers and hacking” in general and how that could mean that their medical data are at risk:

… just because of the risk of that being on the Internet or online access, that kind of thing. Um, it’s dangerous … and for certain things to get out that way. Um, so yeah, if you understand the risk of your personal information being put on the Internet that way, then sure; you should be able to have access to it.

Phase II: survey results

There were 194 students who contacted the study office and were subsequently sent a link to the online survey. Of those, 95 percent (n = 184) were at least 18 years old and completed the consent. The final sample consisted of 178 students who completed or partially completed the survey from both universities. Demographics are displayed in Table 1. The percent of students in the survey study was less White (43% vs 56% and 64%) and more female (68% vs 59% and 37%) than the distribution at the two universities.

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Table 1.

Descriptive statistics of the students in the survey study.

Characteristics	n
Age, years	170
Mean (SD)		25.16 (7.7)
Mode		21
Female, %	175	68
Hispanic, %	173	18.5
Race, %	174
White	76	43.7
Asian	31	17.8
Black	29	16.7
Other	24	13.7
Mixed	14	8.1
Full-time student	175	83.4%
Undergraduate student	177	81.4%
Employed full or part-time	175	66.9%
Single (not married)	174	87.4%

SD: standard deviation.

The majority of the sample, about 80 percent (n = 141), reported having a primary care provider (a PCP, “doctor or nurse practitioner who takes care of your general health”). Of those 141 students who reported having a PCP, 94.3 percent considered their main provider to be outside of SHS. Of the 178 respondents, 92 percent reported a visit to any provider within the last 12 months, and 41 percent (n = 73) reported at least one visit to SHS in the last 12 months. The majority of those who visited SHS reported more than one visit (51%). Of the 178 students, 89 percent reported owning a smart phone, and about 40 percent reported accessing the Internet at least once a week to obtain health information for themselves or someone else.

Student attitudes and beliefs. Table 2 displays the perceived benefits and risks of open notes for those students considered “users” of healthcare. The vast majority of respondents (93%) reported that gaining access to their health records would help them understand more about their health and medical conditions, and they would better remember the plan of their care. Similarly, 89 percent reported that they would feel more in control of their healthcare.

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Table 2.

Proportion of students defined as users of healthcare who agreed or somewhat agreed with statements about the potential benefits of open visit notes for patients.

If I could read my doctors notes …	N	Agree or somewhat agree (%)	Don’t know
It would be a good idea	121	84.5	3.4
I would understand more about my health and medical conditions	121	93	0.8
I would better remember the plan for my care	120	93	0.8
I would take better care of myself	121	83.4	4.1
I would feel more in control of my health care	121	88.4	0.8
I would be more likely to take my medications as prescribed*	112	58.8	10
I would be better prepared for visits	119	79.9	2.5
I would feel more confident talking to my healthcare provider	121	85.2	2.5
I could track my health over time	120	95.0	–
I’d have more trust in my healthcare provider	121	72.7	5.0
I would go to the doctor more often	120	41.7	13.3
I would go to the doctor less often	119	23.5	11.8
I would worry more	118	24.6	3.4
I would be concerned about my privacy	120	48.4	3.3
The notes would be more confusing than helpful	120	21.7	2.5
It could make my provider’s job more difficult	120	29.2	10.0
I would be concerned about identity theft	119	45.3	5.9
It would not affect me at all	118	22.9	9.3

SHS: student health service centers; PCP: primary care provider.

The sample includes students who either reported attending one SHS in the past year, not including vaccination visits, or attended at least two visits to a PCP outside of SHS (n = 121).

Fewer students agreed with statements about risks of open notes. Less than one quarter of participants reported that open notes would make them worry more (23%), and only 21 percent said open notes would make them go to the doctor more frequently. The biggest concerns were identity theft (47%) and privacy (49%).