Why Facilitate Patient Access to Medical Records

Why facilitate patient access to medical records

Ana FERREIRAabd, Ana CORREIAc, Ana SILVAc, Ana CORTEc, Ana PINTOc, Ana SAAVEDRAc, Ana Luís PEREIRAc, Ana Filipa PEREIRAc, Ricardo CRUZ-CORREIAbc, Luís Filipe ANTUNESd

aComputer Laboratory at the University of Kent

bCINTESIS - Center for research in health information Systems and technologies

cBiostatistics and Medical Informatics Dept. at the Faculty of Medicine in Porto

d LIACC – Faculty of Science of Porto

Abstract. The wider use of healthcare information systems and the easier integration and sharing of patient clinical information can facilitatea wider access to medical records. The main goal of this paper is to perform a systematic review to analyze published work that studied the impact of facilitating patients’ access to their medical record. Moreover, this review includes the analysis of the potential benefits and drawbacks on patient attitudes, doctor-patient relationship and on medical practice. In order to fill a gap in terms of the electronic medical record (EMR) impact within this issue, this review will focus on the use of EMR for patients to access their medical records as well as the advantages and disadvantages that this can bring. The articles included in the study were identified using MEDLINE and Scopus databases and revised according to their title and abstract and, afterwards, their full text was read considering inclusion and exclusion criteria. From the 165 articles obtained in MEDLINE a total of 12 articles wereselected. From Scopus, 2 articles were obtained, so a total of 14 articles wereincluded in the review. The studies revealed that patients’ access to medical records can be beneficial for both patients and doctors, since it enhances communication between them whilst helping patients to better understand their health condition. The drawbacks (for instance causing confusion and anxiety to patients) seem to be minimal. However, patients continue to show concerns about confidentiality and understanding what is written in their records. The studies showed that the use of EMRcan bring several advantages in terms of security solutions as well as improving the correctness and completeness of the patient records.

Keywords. Computerized, Medical Records, Patient Access to Records.

Introduction

The wider use of healthcare Information Systems and the easier integration and sharing of patient clinical information can facilitate patients to access their own medical records. With the paper version only, there was the need to gather all the information into a single copy of the scattered medical record and patients had to obtain a formal authorization to access it [1].

According to the European legislation patients should be able to access their clinical information whenever they request and have means to control who can see and change that information[2]. However, this is still not common practice mostly because of logistic and also cultural issues. The general idea is that healthcare professionals think this may negatively affect their relationship with the patients whilst patients themselves do not know if they want to see their medical record and if they do, will it be helpful and will they understand it anyway.

Nevertheless, nowadays, patient access to paper records can be fairly common in some places. Countries like United Kingdom, New Zealand, Canada and USA have enacted legislation to ensure patient access to health records [3]. In 1996, it was stipulated by the HIPAA Act (Health Insurance Portability and Accountability Act) in the USA that patients must be able to access and get a copy of their medical records and correct them as needed [4].

Apart from some disadvantages already mentioned, Ross et al.[1] describes thatpatient access to medical records can facilitate doctor-patient relationship by enhancing doctor-patient communication, which allows the flow of information among them and helps reducing errors and improve quality. However, it can, at the same time, undermine the trust and so harm doctor-patient relationship.

If, on one hand this access can potentially bring some effects on the patients like improving satisfaction, autonomy or self-efficacy it can, on the other hand, cause confusion and anxiety[1],[5]. Outside the health care sector, personal health records can influence many aspects of life, such as obtaining employment, life insurance or consumer credit [3].

The example of a scenario done within the UK NHS (National Health Service) introduced the opportunity of patients to get copies of their referral letters[6]. Although White et al[6] claims that there has been little empirical research done in this area, with this case they expect patients to better understand their situation as well as improve doctor-patient relationship and the quality of medical information.

A review done in 2003 of published material that analysed the effects of promoting patient access to medical records concluded that the revised material consistently showed that it enhances doctor-patient communication [1]. Further, the patient satisfaction is high compared with very few records that found that patients were upset with what they saw.

This same review also indicated that the future is likely to involve EMR and future research will show if this technology will influence positively or negatively patient satisfaction, understanding or any other factor that would affect healthcare. Although EMRmay be able to facilitate the access to clinical information by the patients the fact that it is sometimes fragmented across multiple treatment sites can pose an obstacle to clinical care, research and public health efforts [7] as well as security [8].

The objective of this paper is to perform a systematic review to analyze published work that studied the impact of facilitating patients’ access to their medical record. Moreover, this review includes the analysis of the potential benefits and drawbacks on patient attitudes, doctor-patient relationship and on medical practice. In order to fill a gap in terms of the EMR impact within this issue, this review will focus on the use of EMR as well as the advantages and disadvantages that it can bring.

The next section presents the methods used for the review while section 2 presents the most relevant results. Section 3 discusses those results and the last section gives some hints on what should be the trend to follow when facilitating or not patients’ access to their medical records.

1.Participants and Methods

A systematic review based on articles written between 1990 and 2005 was performed. The dependent variable wasthe effects on medical practice and the independent variable waspatients having access to records. The target population was adult patients andstudies that gave parents access to paediatric records were excluded.

The articles were identified using MEDLINE and Scopus. The resulting query used in MEDLINE was ("Medical Records Systems, Computerized"[MeSH] OR "Medical Records"[MeSH]) AND "Patient Access to Records"[MeSH] NOT (pediatric[All Fields] AND ("records"[MeSH Terms] OR records[Text Word])) AND ("1990"[PDAT] : "2005"[PDAT]). As more medical records are being computerized the mesh term Medical records systems, computerized was added to analyse the access to records through computers. The publishing type Review was excluded as well as the parents’ access to paediatric records, in order to focus the study in the impact of a patient reading their own records. In Scopus search,3 queries were applied: ALL("Medical Records Systems") AND ALL(Computerized) AND ALL("Patient Access to Records") AND PUBYEAR AFT 1990; ALL("Medical Records Systems") AND ALL(computerized) AND ALL("Patient Access") AND PUBYEAR AFT 1990; and ALL("Medical Records Systems") AND ALL(electronic medical record) AND ALL("Patient Access") AND PUBYEAR AFT 1990.

To increase the sensibility of the selection new rules were established. We included articles that analysed the effect of patients’ accessing their medical records and also studied the consequences on patients, health care providers, medical practice and doctor patient relationship. The articles referring to the access of medical records through electronic files were also included. The languages selected were English, Portuguese, French and Spanish.

Excluded from this review were articles referring to specific cases that analysed the property of medical records, the patients’ rights, judging cases, identification of gametes donators and legal documentation.

The articles were distributed by two groups of three people and each group read the titles and abstracts considering the established criteria.

Figure 1 shows the method used to select the articles for the review.

Figure 1 – Method used for the systematic review

In a second step, the methodological quality of the articles was evaluated. In order to extract data from the articles we fragmented our main theme in 14topics.Only 10 of these were explored: Patient Interest and Acceptance, Confusion and Misunderstandings, Patient Education, Creating Anxiety, Providing Reassurance, Promoting Adherence, Concerns about Confidentiality, Improving Doctor-Patient Relationship, Correcting Errors, The Use of Electronic Medical records.

Each article had a grade between 0 and 22 based on 6 criterions. The criterions taken into consideration were: (1) Objective of the study - if it fully coincides with ours it should be given 14 points; 0 points if it has nothing to do with it; and 1 point for each topic it referred; (2) The kind of study – if it was a letter or an editorial it should be given 3 points; (3) Type of sampling – 2 points were given for a randomized sample and 1 point for a non-randomized; (4) Size of the sample – if the article studied a sample of [0-50] people it should receive 0 points and if it studied a sample with more than 50 people it would get 1 point; (5) Method used to collect data – if it was considered appropriated for the conclusions we wanted to achieve it was given 1 point otherwise it should receive 0 points; (6) Concordance between the results and the initial objective of the study (objectivity of the study) – if there was concordance it should be given 1 point and if there wasnot any concordance it should be given 0 points.

After analysing all the articles and considering these criterions, we excluded the ones that received a grade inferior to 11.

As there were not many scientific studies available for the studied theme we decided to include letters and editorials in the review. For these, the last four criterions did not apply, so they were given a grade between 0 and 17. If they had a grade superior or equal to 6 they were included. This means that a letter or editorial to be included had to mention at least 4 topics (Table 1 – Appendix).

2.Results

2.1.Search and selection of the articles

From 165 articles obtained in MEDLINE search queries, 52 were selected after titles and abstracts were read. Then 22 full articles were found and analyzed considering the quality criterions explained in the previous section. From these10 were excluded.A total of 12 articles were included from the MEDLINE search.

On Scopus a total of 21 articles were obtained. From these only 9 were included and we managed to get 3 full articles. The quality criteria selected only 2.

A total of 14 articles have been reviewed to write this paper.

2.2.Data extraction

As described before, in order to extract data our main theme was subdivided in 14topics.Figure 2 shows thenumber and type of article that mention each topic.

Figure 2. Number and type of articles referring each topic

The results presented in this section refer to only 10 of those 14 topics.The Effects on documentation, empowering patients, concerns about sensitive items and improving patient satisfaction were not analyzed. Table 1presents the articles that mention each one of the topics.

Table 1 – Number of articles that referred each one of the 10 studied topics

Topics / No of Articles
YES NO
Patient interest and acceptance / 5[5] [10] [12] [20] [21] / 1[14]
Confusion and misunderstandings / 3[15] [16] [21]
Patient education / 2[4] [17]
Creating anxiety / 1[15] / 4[4] [5] [10] [16]
Providing reassurance / 2[10] [17]
Promoting adherence / 1[7] / 1[11]
Concerns about confidentiality / 3[4] [5] [17]
Improving doctor-patient relationship / 2[4] [17]
Correcting errors / 1[19]
The use of Electronic Medical Records / 8[4] [5] [7] [9] [11] [12] [17] [21] / 1[10]

The following section describes in more detail the results obtained for each topic.

2.3.Patient experience with access to medical records

2.3.1.Patient Interest and Acceptance

Ina studywith cancer patients, 91% of the patients declined the offer to see their medical records and the reasons given were: they trust totally on what the doctor had told them, they think that they knew enough or they wouldnot understand it anyway [14]. The ones that inspected their medical records affirmed they did not obtainany new information and believed that any questions they might have could be answered by the clinical nurse or doctor.

Although the situation referred above presents us a very strong percentage of people who refused the access to their medical records, the interest of patients in seeing their records is generally high[5],[10]. This is revealed by the answers of the patients that were asked about shared records in general, and about shared records online, in particular[20]. 95% of the patients agreed with the statement: “Overall, I think it is a good idea for patients to be able to routinely review their outpatient medical records”. It is also confirmed by this study that the interest was age dependent reducing steadily from 95% for those aged 21-30, down to 68% for those aged 71 and over. Most patients knew that they had the right to access their records and control those accesses although only 5% had actually accessed them.

Some studies have demonstrated that patients’ interest in accessing their medical records was related with factors such as: general concern about health, independency of health status, interest in health information, concerns about patient safety, having a less trusting relationship with their primary physician and also the desire to be more involved in their own care[10],[21]. Ross et al.[11]showed that interest wasnot, however, health status or health care use related nor was it education or income related. This same studyconcludes that a vast majority of patients endorse the concept of patient-accessible medical records and about half support online access. This survey further demonstrates that these attitudes are shared even by patients in ethnically diverse and socio-economically disadvantaged populations. Focusing the accessto the medical recordsviaInternet, this study also revealed through a multivariate analysis that demographic features such as age, gender, race and education did not influencethe interest in online patient-accessible records. The primary predictor was previous experience with the Internet, followed by expectations of the benefits and drawbacks of reading the medical record.

Other studieshave concluded that patients who have looked at their medical record in the past remain interested in reading it[10],[11]. Patients who didnot know that they had the legal right to inspect their records were more than twice as likely to be very interested in reading their record[9]. Another aspect revealed was that women are more interested in accessing their medical records than men.

Other findings were that patients were more interested in seeing their laboratory results followed by the physician’s notes[10],[12]. Patients were least interested in seeing past medication[10]. Most of the patients were interested in reading their medical record at regular intervals but not very frequently.

2.3.2.Confusion and Misunderstandings

Some studieshave revealed that incomprehensible jargon or pejorative comments will understandably confuse or distress the patients[15],[16]. This was an argument used many times in order to keep the medical recordssecret.

Another study refersthat patients of community health centers were more likely to be confused by various parts of the medical record and also embarrassed or offended by doctors’ notes, in comparison with academic primary care clinical patients [21].

2.3.3.Patient Education

The articles collected refer that in the majority of the cases an advantage to access the medical records is patients’ education. The access to the records helps patients to understand their health condition as well as what the doctor thinks[4],[17].

Patientswho had access to their electronic medical records improved their own knowledge about their disease and increased the sense of ownership of their health care. This fact helped them to be more involved in their treatment and increased their ability to coordinate their care. It also allowed them to confirm the doses of medications and to provide laboratory results or medical information to other doctors. This has promoted patients’ sense of personalized support and capacity to look up their results[10],[12].

A disadvantage referred by some patients is the difficulty to understand medical records because of the use of technical language.

2.3.4.Creating Anxiety

Although seeing their medical records can cause patients some anxiety or upsetting at times [15],recent studies and letters demonstrated that this is, in a vast majority of the cases,not true[4],[5],[10].

Recent experiences with patients who had access to their own records showed that doctors and patients considered the experience positive and did not cause any kind of anxiety or upset[16].

Psychiatric patients may respond less favourably than other patients. In spite of causing distress in a short term, in a longer term the access to records may be therapeutic. In a transversal study using adult psychiatric patients who had access to a written clinical summary about themselves, only 28% of the patients were upset with what they had read and 51% rated the written assessment as having provided helpful information [15].

2.3.5.Providing Reassurance

After reading and understanding what their doctor wrote about their health treatment the patients felt more reassured about their disease or health condition[10].

Patients felt reassured and more relaxedbecause their records gave them clear ideas about their health condition [17].

2.3.6.Promoting Adherence

In agreement with an American study based in the analysis of the American legislation about this theme, the simple fact of opening access to medical records can improve patients’ adherence to treatment, the efficiency of the service and strengthen the role of the profession [7].A descriptive article about adherence shows that patients’ interest in viewing recordsincreases after one interview which explains the objectives or the consequences of that access. In these cases, patients change their life style. They try to be more careful in order to follow medical recommendations.