Introduction

1. Introduction

2. Past: → Single copy of each medical record; → Patients had to obtain an authorization to look at it. [1] Ross SE, Lin CT. The effects of promoting patient access to medical records: a review. J Am Med Inform Assoc 2003 May-Jun; 10 (3):294 • Present: → Patient access to records is fairly common; → Some countries have enacted legislation to ensure subject access to health records; [3] Carter M. Should patients have access to their medical records? Med J Aust 1998; 169:596-597 • Potential effects on patients: → Improve satisfaction; → Cause confusion and anxiety; → Improve autonomy or self-efficacy; [1]Ross SE, Lin CT. The effects of promoting patient access to medical records: a review. J Am Med Inform Assoc 2003 May-Jun; 10 (3):294 [5] Pyper C, Amery J, Watson M, Crook C. Access to electronic health records in primary care - a survey of patients’ view. Med Sci Monit, 2004; 10 (11): SR17-22.

3. Potential effects in doctor-patient relationship: → Enhance doctor-patient communication; → Reduce errors and improve quality; → Undermine trust and so harm the relationship. [1] Ross SE, Lin CT. The effects of promoting patient access to medical records: a review. J Am Med Inform Assoc 2003 May-Jun; 10 (3):294 • The creation of EMR is facilitating the wider dissemination of data. • Some of these systems may fragment medical records. • Medical records can also be fragmented across multiple treatment sites. [2] Mandl KD, Szolovitz P, Kohan IS. Public standards and patients’ control: keep electronic medical records accessible but private. BJM 2001 Jun 2; 322 (7298): 1368-9

4. Objective Perform a systematic review in order to analyze the potential benefits and drawbacks of providing adult patients access to the information in their medical records, in terms of patient attitudes, doctor-patient relationship and on medical practice.

5. Methods

6. Research made using PubMed and Scopus • Finding relevant mesh terms for Pubmed research • Establishing queries PubMed: (“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]) Scopus: ALL("Medical Records Systems") AND ALL(Computerized) AND ALL("Patient Access to Records") AND PUBYEAR AFT 1990 Scopus: ALL("Medical Records Systems") AND ALL(computerized) AND ALL("Patient Access") AND PUBYEAR AFT 1990. Scopus:ALL("Medical Records Systems") AND ALL(electronic medical record) AND ALL("Patient Access") AND PUBYEAR AFT 1990.

7. Criteria Inclusion Exclusion • Patients accessing their medical records • Patients access to medical information, • Analysing the consequences to patients, doctors, medical practice and doctor-patient relationship • Access of medical records through electronic files by patients • Articles written in portuguese, english, french and spanish • The propriety of medical records; • Rights of patients, judging cases; • Confidentiality between doctor and patient • Access to the records of gametes donators; • Legal documentation and health systems;

8. Full articles research using: • Internet • Publication available • E-mails to the authors • Article quality evaluation: • As we couldn’t found a check list suitatable for this paper we had to make one. • As the number of scientific articles regarding the theme it was decided to include article and editorial. • Scientific paper: grade [0,22], if superior to 11 was included. • Letter and editorials: grade [0,17], if superior to 6 was included.

10. Data extraction: • Patient Interest and Acceptance, • Confusion and Misunderstandings, • Patient Education, • Creating Anxiety, • Providing Reassurance, • Empowering Patients, • Promoting Adherence, • Concerns about Sensitive Items, • Concerns about Confidentiality, • Improving Doctor-Patient Relationship, • Correcting Errors, • Improving Patient Satisfaction, • The Use of Electronic Medical records.

12. Results

13. From the 164 articles obtained in the PubMed search, 52 were selected as potentially important after reading titles and abstracts. • Scopus: 21 articles, from which only 9 were selected • From pubmed were found 22 full articles and from scopus 3 • Then we analysed considering the quality criterions and, from those 22, were excluded 9. • Quality criteria selected the 2 articles on scopus. • A Total of 15 articles has been analysed for this paper.

17. Patients Interest and Acceptance • The majority of patients would like to access to their records8. • Most patients knew that they had the right to access to their records although only 5% had done so15. • A study8 referred that the interest wasn’t dependent on: • education level; • social status.

18. Patients Interest and Acceptance • Some studies revealed that the interest was related with many factors, such as: • Having a less trusting relationship with their primary physician8; • The desire to be more involved in their own care8; • Age: people with age between 21-30 years are more interested in seeing their medical records15; • Sex: women are more interested in their medical records compared with men8.

19. Educating patients • The access to the records: • Helped patient to understand what doctor thinks6; • Improved their own knowledge about their disease15; • Helped them to be more involved in their treatment,to focus their efforts at self-education and to coordinate their care15; • A disadvantage referred by patients is the difficulty to understand medical records due to the use of technical language15.

20. Promoting adherence • The patients access to their medical records can: • Improve the patients adherence to treatment14; • Improve the efficiency of the service14; • Change the patients style of life6; • Make patients more careful to follow the medical recommendations6.

21. Concerns about confidentiality • In a randomized controlled trial15 patients were concerned with the possibility of records being available to other people without their permission. • 24% of the patients analized in one study6 were concerned about : - lack of trust in staff peolpe - insecurity for not knowing how the system worked - the ability of others to get into the system • Patients shown satisfaction with PatCIS, a system designed to prevent unauthorized access to records, maintaining privacy10.

22. Improving doctor-patient communication • In a transversal studie6: • Over 75% of patients believed that access to medical notes would brake down barriers between them and the doctor • 70% felt it would give them more confidence in the doctor • Over 65% felt it would help them to understand their condition • 67% of the patients disagreed that it would give them less confidence in their doctor

23. Improving doctor-patient communication • In another study15 most patients and doctors believed that accessing to electronic health records was positive for both and improve communication. • A study8 concluded that patients with a less trusting relationship with their doctor were more interested in reading their medical record • Patients who had strong relationships with their doctor weren´t so interested in seeing it because they trust them.

24. Correcting Errors • Patient accessible medical records offer them the opportunity to correct errors in the record. • Patients may also introduce errors by making unauthorized additions or deletions to the medical record. • In one study analysing general practice medical records 24% of patients said that were mistakes and 30% omissions in their records, including allergies, dates of birth, addresses and so on17.

25. The Use of Electronic Medical Records • In six of the thirteen selected articles (≈ 46%) the patients were given access to their electronic records. • In two randomized clinical trials9,15 patients and doctors were given access to health records through internet: • System used: SPPARO • the majority of patients and doctors found this system easy to use, useful and considered that it can improve health care quality.

26. The Use of Electronic Medical Records • In other10 study was created a project, called PatCIS. • Patients considered this access useful and that improved their communication with health care providers. • In another randomized clinical trial6 patients were given access to their EMR through a system that used a fingerprint recognition technology. • In this study patients showedvery interest in seeing their electronic records over the internet.

27. The Use of Electronic Medical Records • Preferred mode of access to medical records: • through a paper copy of their medical record (49.3%); • through an electronic version at a secure private web site (43.8%)8. • In one study concluded that about half (56%) of the patients support online access. • It also concluded that previous experience with Internet increased the patients interest in online records.

28. The Use of Electronic Medical Records • An editorial: by allowing patients interaction with the EMR physicians have much more accurate and up-to-date information for managing therapy. • There are still certain problems with that access that must be overcome: - ensuring privacy - determine the ways in which patients should be able to influence their charts.

29. Introdução à Medicina 2005/2006 Discussion

30. Introdução à Medicina 2005/2006 • Most of the studies reveal that access to medical records cause no harm on medical practice, doctor-patient relationship or patient attitude. • Limitation: • not using randomized trial; • small sample size; • small study duration time; • the use of unstandardized measuring instruments; • number of articles found.

31. Introdução à Medicina 2005/2006 Advantages: • Accessing medical records enhance communication between doctor and patient and make patients understand better their health condition. • In a less trusting physician-patient relationship, there was a bigger interest in accessing the records. • Patients educating: better knowledge of the disease and participation in their health treatment. • Adherence: made patients more careful on following medical recommendations

32. Helps correcting errors and omissions, but patients can also introduce wrong information to the records by making unauthorized additions or deletions. • Concern about the security of sensitive items and confidentiality of the records: • The use of codes to identify sensitive items • Whether records could became available to employers or governmental agencies, so the use of safeguard program was well seen by most of the patients.

33. Introdução à Medicina 2005/2006 • New ways of accessing medical records have been developed, such as web sites in the internet, programmes • In contrast to paper medical records, electronic medical records are more accessible and easier to read. • Enhances the debate whether patients should or shouldn’t access medical records • Patients are more concerned about confidentiality • The use of internet undermines technologic knowledge.

34. Introdução à Medicina 2005/2006 Disadvantages: • Difficulty of understanding medical technical language • A randomized control trial concluded that accessing medical records has no effects on patients’ health status or adherence to the treatment. • Pejorative notes cause confusion and stress on patients and others refer that it create anxiety

35. Conclusion

36. Increase of opportunities for patients to have access to their own medical record; Increase of patients interested in see them; Patients with cancer and psychiatric pathologies decline the offer to inspect their medical record; Improvements on patient´s education, adherence and reassurance and also on doctor-patient communication;

37. Patients and doctors defend that it drives to a mutual trust between them, promoting personalized support of patient-driven communication and a sense of illness ownership; • Patients find some parts of the medical records difficult to understand; • It´s suggested the use of electronic medical records that allow the reduce of errors; • Patients expressed concerns about the security and confidentially of their records online;

38. Majority of patients and doctors believe that the access to electronic health record is positive for both. • EMR enhance patients opportunities to consult them. • It seems that the advantages overall the disadvantages of patients having access to their medical files • Due to the limitations referred above is not possible to take definitive conclusions.

39. Gantt chart

40. References

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42. Acknowledge: Prof. Dr. Altamiro da Costa Pereira Ana Ferreira Professores das aulas teóricas

43. Work done by: • Ana Bárbara Cardoso • Ana Filipa Lima • Ana Filipa Pereira • Ana Filipa Silva • Ana Filipa Côrte • Ana Isabel Correia • Ana Isabel Machado • Ana Isabel Pinto • Ana Luís Pereira • Ana Margarida Saavedra