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Introduction. 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:

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slide2
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.

slide3
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

slide4
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.

slide6

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.

slide7

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;
slide8
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.
slide10
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.
slide13
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.
patients interest and acceptance
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.
patients interest and acceptance1
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.
slide19

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.
promoting adherence
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.
concerns about confidentiality
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.
slide22

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
slide23

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.
slide24

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.
slide25

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.
slide26

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.
slide27

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.
slide28

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.

slide30

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.
slide31

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
slide32
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.
slide33

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.
slide34

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
slide36

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;

slide37
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;
slide38
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.
slide41
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
  • 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
  • Carter M. Should patients have access to their medical records? Med J Aust 1998; 169:596-597
  • Fairweather NB, Rogerson S. A moral approach to electronic patient records. Med Inform Internet Med 2001; 26:219-234
  • 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.
  • Honeyman A, Cox B, Fisher B. Potential impacts of patient access to their electronic care records. Inform Prim Care. 2005;13(1):55-60.
  • Winkelman WJ, Leonard KJ, Rossos PG. Patient-perceived usefulness of online electronic medical records: employing grounded theory in the development of information and communication technologies for use by patients living with chronic illness. J Am Med Inform Assoc. 2005 May-Jun;12(3):306-14. Epub 2005 Jan 31.
  • Fowles JB, Kind AC, Craft C, Kind EA, Mandel JL, Adlis S. Patients' interest in reading their medical record: relation with clinical and sociodemographic characteristics and patients' approach to health care. Arch Intern Med. 2004 Apr 12;164(7):793-800.
  • Ross S, Lin CT. A randomized controlled trial of a patient-accessible electronic medical record. AMIA Annu Symp Proc. 2003;:990.
  • Cimino JJ, Patel VL, Kushniruk AW. The patient clinical information system (PatCIS): technical solutions for and experience with giving patients access to their electronic medical records. Int J Med Inform. 2002 Dec 18;68(1-3):113-27.
  • Warden J. Patients to see medical records. BMJ. 1991 Sep 7;303(6802):538. e.
  • Rostom AY, Gershuny AR. Access to patient records. Lancet. 1991 Nov 23;338(8778):1337-8.
  • Bernadt M, Gunning L, Quenstedt M. Patients' access to their own psychiatric records. BMJ. 1991 Oct 19;303(6808):967.
  • McLaren P. The right to know.BMJ. 1991 Oct 19;303(6808):937-8.
  • Earnest MA, Ross SE, Wittevrongel L, Moore LA, Lin CT. Use of a patient-accessible electronic medical record in a practice for congestive heart failure: patient and physician experiences. J Am Med Inform Assoc. 2004 Sep-Oct;11(5):410-7. Epub 2004 Jun 7.
  • Jones R, Cawsey A, Bental D, Pearson J. How should we evaluate patient access to their own records? An example with cancer patients in Scotland. Stud Health Technol Inform. 2003;95:152-7.
  • Jones R. Patient access to records must be acceptable to both parties. BMJ. 2001 Jun 2;322(7298):1368-9.
  • Ross, S.E., Todd, J., Moore, L.A., Beaty, B.L., Wittevrongel, L., Lin, C.-T.Expectations of patients and physicians regarding patient-accessible medical records(2005) Journal of Medical Internet Research
  • Tsai, C.C., Starren, J.Patient participation in electronic medical records(2001) Journal of the American Medical Association 285 (13), p. 1765.
slide42
Acknowledge:

Prof. Dr. Altamiro da Costa Pereira

Ana Ferreira

Professores das aulas teóricas

slide43
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