Giving rheumatology patients online home access to their electronic medical record (EMR): advantages, drawbacks and preconditions according to care providers

Technology enables patients home access to their electronic medical record (EMR), via a patient portal. This study aims to analyse (dis)advantages, preconditions and suitable content for this service, according to rheumatology health professionals. A two-phase policy Delphi study was conducted. First, interviews were performed with nurses/nurse practitioners (n = 9) and rheumatologists (n = 13). Subsequently, collected responses were quantified, using a questionnaire among the interviewees. The following advantages of patient home access to the EMR were reported: (1) enhancement of patient participation in treatment, (2) increased knowledge and self-management, (3) improved patient–provider interaction, (4) increased patient safety, and (5) better communication with others. Foreseen disadvantages of the service included: (1) problems with interpretation of data, (2) extra workload, (3) a change in consultation content, and (4) disturbing the patient–provider interaction. Also, the following preconditions emerged from the data: (1) optimal security, (2) no extra record, but a patient-accessible section, (3) no access to clinical notes, and (4) a lag time on the release of lab data. Most respondents reported that data on diagnosis, medication, treatment plan and consultations could be released to patients. On releasing more complex data, such as bodily examinations, lab results and radiological images the opinions differed considerably. Providing patients home access to their medical record might be a valuable next step into patient empowerment and in service towards the patient, provided that security is optimal and content and presentation of data are carefully considered.


Introduction
Providing patients online home access to their electronic medical record (EMR) oVers a new perspective on patient empowerment [1]. In several studies, including studies in rheumatology, patients are found to be eager to access their EMR, independent of age, race or education level [2][3][4][5][6][7]. Patients report that it would enhance involvement in their treatment and that it would give them the feeling of ownership of their own medical information [7]. However, despite potential beneWts and patients' positive attitudes, studies among health professionals in several areas show that professionals are more cautious towards providing patients home access to their EMR [2,8,9]. While health professionals have acknowledged beneWts, such as increased patient knowledge and empowerment, or improved doctor-patient communication, many concerns about confused patients and increased workload still remain [2,10]. As a result, the service of providing patients home access to their medical data remains scarcely implemented [9,11].
In the Weld of rheumatology, patient home access to the EMR seems particularly useful, since patient self-management and patient empowerment are considered highly important. Moreover, rheumatology care providers often have a long-term treatment relationship with their patients, in which cooperation plays an important role [12]. Yet, no previous studies on providing rheumatology patients online access to their EMR's have been published. Knowledge on how rheumatology care providers feel about oVering their patients home access to their EMR is, therefore, lacking. The aim of this study was to analyse rheumatology care providers' foreseen advantages and disadvantages towards this service, and to examine how this service could be used in clinical practice.

Methods
A policy Delphi method was used [13], in which care providers' opinions on patient home access to the EMR were explored, using qualitative interviews, and in which areas of (dis)agreement were identiWed in a quantitative survey containing questions based on the interview data [14,15].

Recruitment of participants
Twenty-two rheumatologists and thirteen nurses/nurse practitioners, from twelve hospitals spread over the Netherlands, were randomly selected from the most recent versions of the Dutch Rheumatology Association's members lists [16,17]. Thirteen rheumatologists (59 %) and nine nurses/nurse practitioners (69 %) from nine diVerent hospitals agreed to participate in an interview. The interviews were scheduled at the care providers' hospital and took approximately 45 min. Data saturation was reached, meaning that no new information of added value was obtained in the Wnal three interviews [18].

Phase 1: interviews
Each interview started oV by asking care providers about their work-related Internet use, and their views on using a patient portal in rheumatologic care. The interviews continued by showing care providers a paper prototype of an online patientaccessible EMR, oVering patients home access to their diagnosis, medication, treatment plan and latest lab results, and access to care providers' clinical notes. The interview scheme contained the following Wxed questions: "What would be the advantages/disadvantages of this service?" "Would the advantages/disadvantages diVer for patients and care providers?" and "What preconditions or guidelines would you set for this service on a hospital based patient portal?".
The audiotapes of the interviews were transcribed verbatim. Using content analysis, two independent researchers (RvdV and CHCD) selected quotes on advantages, disadvantages and preconditions, and coded them into categories. Subsequently, these categories were discussed between the two researchers, until consensus about the Wnal categories was reached.

Phase 2: questionnaire
In phase two, the categories of responses from phase 1 were translated into a questionnaire with pre-formulated answering categories. Each item could be answered on a 5-point Likert scale, ranging from "deWnitely yes" to "deWnitely no". Tables 1 and 2 provide an overview of the categories and items on, respectively, advantages and disadvantages. Table 3 shows three additional items which reXect preconditions mentioned by the care providers in the interviews. Additionally, items were designed to examine suitable content for a patient home-accessible EMR (see Table 4). Results from the questionnaire were analysed by quantifying scores on each item and calculating percentages of care providers who agreed, or were neutral or disagreed on the items.

Participants
Twenty-two care providers were interviewed in phase 1. All the nurses/nurse practitioners (n = 9) were female, with a mean age of 40 years (range 26-52). Among the interviewed rheumatologists (n = 13) Wve were male and eight were female, with a mean age of 46 years (range 38-64). All interviewees used the Internet regularly, also for workrelated purposes. In phase 2, response on the questionnaire was 77 %, in total eight nurses/nurse practitioners and nine rheumatologists Wlled out the questionnaire, with a mean age of 44 years (range 28-64).

Perceived advantages to patient home EMR access
Five main categories of advantages could be distinguished. First, a large majority of the interviewees felt that the service could improve patient participation and involvement in the treatment process. "I can imagine that as a patient, you'd like to look through your data before a consultation. That way, you'd be more prepared." [Nurse practitioner, Female, 50 years old]. Second, several care providers mentioned that the service could enhance patients' knowledge and make them better informed about their disease and treatment. This might enhance treatment adherence, since patients could have a better understanding of how and why their treatment works. Third, the service might aVect the patient-provider interaction, due to the shared information and the openness of the record "People can have strange ideas on what doctors write about them. Sometimes there is a feeling of mistrust, which can be taken away by this." [Rheumatologist, Female, 47 years old]. Furthermore, a few care providers reported that the service could positively inXuence patient safety, since the reading along of patients might reduce mistakes. "I think it forces us to write things down very precisely." [Rheumatologist, Female, 43 years old]. Finally, improved communication with others was DeWnitely not/ probably not % a (n)

Patient: provider interaction
It could improve the trust that patients have in their provider 53 (9) 29 (5) 18 (3) It could equalize patient-provider communication 47 (8)  41 (7) 12 (2) It could enhance the patient-provider relationship 47 (8) 29 (5) 24 (4) Patient safety It could enhance safety of care, for patients can read along and detect mistakes 59 (10) 24 (4) 18 (3) Communication with others It could support patients in communicating with friends and family about their disease and treatment, because they can look at the record together 76 (13) 18 (3)  6 (1) It is practical that the patient can take the record along to another hospital/GP/on vacation 76 (13) 18 (3) 6 (1) DeWnitely not/ probably not % a (n)

Consult information
Reason consult 88 (15) 6 (1) 6 (1)  Table 1 shows the answering frequencies of the items related to advantages of patient home access to the EMR. According to the respondents, the service could particularly have a positive inXuence on patients' participation in treatment (65-88 %), their knowledge and self-management (77-82 %), and their communication with others (76 %). The most frequently agreed upon disadvantage, regarded patients' skills to interpret their medical information (88 %) ( Table 2). As for preconditions, according to 94 % of the respondents, the home-accessible record should be an extraction of the existing EMR, and not a separate record (Table 3). Furthermore, 82 % would prefer an inaccessible section in the record, to write down personal notes. A lag time on the release of lab data was an important precondition for 65 % of the respondents. Table 4 provides an overview of suitable content for a patient home-accessible EMR. Large parts of the disease and treatment data could be released to patients, according to most respondents. However, on more complicated outcomes, such as results of physical examinations, several lab results and radiological images, a diVerentiation is shown between the care providers. Moreover, most respondents (71 %) did not want patients to have access to their clinical notes.

Discussion
Investigating rheumatology care providers' opinions on patient home access to the EMR led to varying reactions. Expected positive consequences were an increase in patient participation in treatment, an increase in patient knowledge, self-management and patient safety, a more equal relationship between the patient and the care provider, and practical beneWts in communication with others. Nevertheless, according to the respondents, patients might experience diYculties in interpreting medical data, which could cause (unnecessary) interpretation and communication problems, and an increase in workload. Overall, these Wndings agree with what is found in previous studies on care providers' stands on this subject [5,13,19]. While the use of homeaccessible EMRs in rheumatology practice is not described in literature yet, there are some examples from general clinical practice in which this service is adopted already. Generally, the key message conWrms a number of positive outcomes, and very few negative ones [20][21][22]. It seems that the anticipated problem of worried or oVended patients hardly occurs [3]. Several evaluations reveal that patients are generally enthusiastic about the access; they Wnd it informative, they use it to prepare consults and they state that it enhances the understanding of their treatment [20,21,23,24]. Positive outcomes concerning enhancement of trust in the care provider and more secure documentation are shown as well [3,24,25]. Earnest [10], furthermore, concluded that physicians in cardiology did not report any change in workload and no adverse consequences for their practicing procedures. Still, these former studies did reveal some necessary improvements. Patients regularly could not understand all the information in their record [8,20] and they reported that they felt the need for aids to interpret (laboratory) tests or technical terms [10]. Our results on care providers' views on preconditions and on suitable content to display to patients anticipate on these kind of diYculties. The results showed that most care providers do not want patients to view an overload of detailed information, in order to increase information provision without increasing confusion. Complex results as full blood test results and radiological images should not be available to patients, nor should providers' clinical notes. Also, lab results should not be available to patients until after consult, in order to explain the information to the patient Wrst. Thus, involving care providers in the Wrst phases of the developmental process of patient services is essential.
This study is limited because of the small amount of respondents. However, we feel that the combination of interviews and a questionnaire, among care providers from diVerent hospitals, has covered all main arguments. Further research on the implementation of a patient home-accessible EMR should focus on how care providers' preconditions can be translated in the development of this service. A pilot study in clinical practice in which patients have access to their EMR is currently being set up, in order to study its' advantages and disadvantages for all parties.
In conclusion, care providers are positive about providing patients home access to their medical record, because it might be a valuable next step into patient participation, patient empowerment, and in service towards the patient. In order to use this service in clinical practice, security must be optimal, and careful consideration of the content and presentation of the data is necessary. Participatory design, in which both patients and care providers are involved in the development of the service, is eminent to make this service useful in clinical practice.