Allowing patients to read their records while waiting to see the GP gives them greater confidence in their dealings with the doctor, explains Dr Brian Fisher

Our research has shown that allowing patients access to their medical records has clear benefits for both doctors and patients:

  • The process improves the doctor-patient relationship by encouraging honesty and openness.
  • Inequality of information between doctors and patients is reduced.
  • Patients are more likely to become involved in their own care and contribute to the management plan. They develop a better understanding of doctors' working methods and of their own illness.
  • Patients become more confident in their dealings with doctors.
  • Patients feel better equipped to plan their future in the light of information they acquire about their illness.
  • Inaccuracies in the notes are identified and corrected, and unnecessary negative, hearsay or derogatory information in the notes is avoided.
  • Litigation is probably reduced.

The procedure

In the waiting room

Patients are handed their records while they are waiting (often for a considerable time) for their appointment in the waiting room. Once the notes are in their hands, they are free to read any or all of their notes, if they have the time.

If they have any questions about what they have read in their notes, the receptionists are always happy to discuss them.

Notes from which information has been removed for 'third-party reasons' are marked, so that the patients know that there are letters etc. missing. 'Third-party information' is information relating to someone other than the patient. For instance, there may be descriptions of other peoples' feelings such as 'mother said she resented her baby' in the baby's notes, which are still present when the baby has grown up.

Patients can see information that goes back to when their notes began.

On occasion, a doctor will discuss with a patient a letter or result that has been temporarily withheld. This might be because the letter contains alarming information that needs to be interpreted in the presence of a doctor.

What receptionists and administrative staff do

Receptionists amalgamate incoming notes, putting the old and new records together in order. This includes adding any extra data to the records, such as recent hospital letters, or health promotion information such as recent smear test results.

Receptionists also have to look through the records to see if they contain any frightening information or critical comments about the patient. If they find any such information, they bring it to the doctor's attention. Any such letters are removed, and a marker is placed on the notes to indicate this removal. It is then the doctor's job to discuss the letter or result with the patient the next appropriate time they are seen.

Any third-party information found in the notes is also removed, and filed elsewhere. Doctors still have access to this information, and a sticker is placed on the records to inform patients of its removal.

Receptionists give patients their records when they come for their appointments. Receptionists do not give notes to any third party, such as a parent, another relative or a carer, except for the parent of a child under 16 years of age.

Both receptionists and administrative staff respond to and correct any administrative, but not clinical, errors spotted by patients.

Receptionists and administrative staff will photocopy (for a fee of 50p per page) any part of the notes requested by a patient.

What doctors and nurses do

Doctors and nurses have to answer any questions that patients may have regarding information in their notes. They also discuss changing any administrative errors that patients find in their notes.

Doctors and nurses discuss with the patients any changes that patients want to make to the notes. For instance, an inaccuracy in the history may be brought to their attention. However, they never erase anything from the notes, but may add comments.

Aims of showing patients their records

Sharing power: There is an obvious power imbalance in the doctor-patient relationship. Information is a key component of control. Sharing records with the patient helps to reduce this imbalance.

Sharing information: Our evidence shows that patients are happier and calmer in the surgery. They also feel better equipped to plan for the future, knowing that they have all the information they need.

Demystifying the medical process: By sharing information, the whole medical process becomes clearer and less distant from the patient. This makes the patient more confident in, and less scared of, the system.

Correcting errors in the records: Patients can be very helpful in pointing out basic errors in their own records, such as their date of birth. However, generally patients do not seem keen to volunteer the correct information when they have noted something wrong in their notes.

Increasing the patient's responsibility in their own management: Once patients have seen and read their notes, it is their responsibility to ask the doctor any questions they have. They can decide with the doctor the best way to manage their care. By being in receipt of such information, patients are more likely to be able to take decisions for themselves.

The legal framework relating to the sharing of records with patients is outlined in Figure 1 (below)

Figure 1: The legal framework
  • In November 1991, the Access to Health Records Act 1990 became law. This allows patients access to medical information held in manual form from November 1991 onwards.
  • Patients can apply for access, in writing, from the practice. A written response must be made within 40 days. A charge of £10 can be levied.
  • Information is allowed to be withheld if:
    • the notes are likely to cause mental or physical harm to the patient.
    • the records hold information about or from a third party. This becomes void if the third party has given his/her permission for the patient to see the notes, or if the third party is a health professional and has provided the information in a professional capacity.1
  • The Data Protection Act 1984 allows all citizens of the UK access to all data about them held electronically.
  • All patient records are officially owned by the Secretary of State and are not the property of the practice or the patient, as is sometimes thought.

Summary of the research

Research on patients' views and doctors' concerns about sharing information with patients is summarised in Figure 2 (below).

Figure 2: Patients' views and doctors' concerns: a summary of the research
Patients' views
  • Most patients want more information than they are routinely given: The research indicates that patients prefer to have more information than less, even if it is about serious illnesses such as cancer.2

    "I am checking really that they are telling the truth. This is one of my things – I do like to know the truth. I am not squeamish and I like to know what is going on. I don't like being left in the dark."3

  • Patients adapt well to receiving bad news: Even in extreme cases, most patients adapt better than expected to bad news they read in the notes.4
  • The effect of information withheld is unpredictable: Many doctors believe that if negative information is withheld, the patient will be less worried. However, contrary to doctors' beliefs, patients are generally calmer than expected when told bad news.5
  • Patients understand more than doctors think they do: Doctors tend to assume that patients will not be able to understand the information held in their notes. However, the research shows that patients understand more than doctors initially anticipate.6
  • Patients become better informed about technical terms: Patients will ask doctors and receptionists about terms they read in their notes. By doing this they become better informed. For example, one patient read on her MSU result the words 'no growth'. She queried this with the doctor, saying she did not even know they were looking for cancer. The doctor was able to reassure her that the reference was to bacterial, not malignant, growth.7
Doctors' views

Most doctors are reluctant to offer patients enough information. Truth is seen as a dangerous resource, appearing to some doctors to have unpredictable consequences. The reasons for this view include:

  • Doctors are reluctant to inform patients about their illnesses: Doctors are worried that the information obtained by their patients may worry or scare them unnecessarily. Consultants have admitted fearing that patients may 'jump off the nearest building'.3
  • Doctors protect themselves against the stress of delivering bad news: No-one likes delivering bad news, and one way for doctors to protect themselves against having to give and discuss bad news is not to allow their patients to read it in their notes.3
  • Patients are thought to need more protection than they actually need: There are certain situations in which doctors believe their patients need to be protected from bad news. Doctors feel that patients' hope can be destroyed if they read frightening information. The evidence and our experience suggest otherwise.

    "In order to sort of face life, face their relations and so forth they have got to perhaps have a grain of optimism about getting out I think that if you have too much battering without hope you will cave in, so I think people do need that [hope] to stand these sort of unpleasantnesses that go on." 3

  • Doctors fear an increase in litigation: There is always concern that if patients have increased knowledge there is a higher risk of litigation. Again, the evidence contradicts this concern.8
  • Concern that doctors' credibility may be undermined if the outcome is different from that predicted: Doctors fear that when a patient reads a hospital letter that describes and defines their illness and symptoms as different from that initially diagnosed, the patient may lose confidence in the doctor.3
  • Doctors' lying may be exposed: Qualitative research shows that consultants have been known to lie about the details of certain illnesses, especially hidden cancers. If patients read their notes, these lies may be exposed. This is likely to apply to all doctors, although the research has only examined the reaction of consultants.3

Evidence on record-sharing

Experience in hospitals worldwide

No increase in litigation: There is good evidence that patients welcome access to their records. In Denmark,9 where record access has been introduced into the whole hospital system, and the US, where some states have introduced record access and others have not,10 there has been no sign of any increase in litigation above the general background rate.

Giving notes to patients in outpatient departments is safe and well received: In one study,11 only 28% of NHS psychiatric outpatients were upset at seeing written summaries of their records.

When outpatients at a health centre in Vermont were allowed to read their notes, 97% felt less worried about their health, and 85% said that they would be more compliant with physicians' recommendations.12

Experience at Wells Park Practice

Figure 3 (below) summarises the results of research carried out at our practice.7

Figure 3: Results of research carried out at Wells Park Practice3,7
76% of patients read their notes
  • 11% of those were upset – these were mainly patients with psychiatric problems
  • Those who were upset still felt that the process was right, and were encouraging about the idea of giving patients their notes to read
  • 67% were familiar with the contents
  • 60% felt that they understood hospital letters
  • 12% found inaccuracies in the GPs' notes, such as dates of birth. Two-thirds told no-one about these inaccuracies, presumably because they were too scared of our bureaucracy
  • Some patients felt that doctors hid information
  • Even news about cancer seemed reassuring, mainly because it helped them plan for the future
  • Of 34 patients with cancer who saw their notes,3 only two reacted badly: the other 94% found the experience helpful

Our research has shown that sharing information with patients can improve the doctor-patient relationship2 in a number of ways:

  • Patients are much more likely to understand the way a doctor thinks and makes medical decisions if he/she discusses the information with them.
  • Patients feel more confident in their doctors if they have access to the same information
  • The doctor–patient barrier is reduced
  • Note-taking and the accuracy of the notes improve, as does the readability of the records by both patients and staff
  • Patients become better informed about medical issues.

Patients have often told us that reading the notes has reduced their anxiety – particularly the worry that professionals are hiding some important fact from them. Secrecy of information encourages paranoia.

Issues and problems raised by record sharing

Telling the truth and lying: There is continual pressure on doctors to be open with their patients. It is becoming much more difficult to skate over complexities and unpleasant news.

Problems may arise if someone else has been economical with the truth to the patient. For example, if a consultant has been less than candid, the patient may later read the truth in his/her record.

It can affect relations with consultants: Some consultants forget that patients now have potential access via the Access to Health Records Act 1990.

From what date should patients be allowed access? The Access to Records Act allows qualified access from November 1991. It is not retrospective.

In our system, we have allowed patients to have access as far as their notes go back. We could not contemplate separating the notes from before and after November 1991, and in any case we are keen for patients to have access to all appropriate information held about them. As the research has shown, this has not caused any problems.

Writing speculative diagnoses, e.g. 'This might be MS': This is the major limitation of allowing patients access to their records: it might cause difficulties if the doctor cannot freely speculate about possible diagnoses in case the patient reads them and becomes needlessly concerned. The best response to this is to be honest in the first place, before committing to paper or screen.

Writing prejudicial comments: These should in any case be avoided. If offensive comments from the past are read by the patient, it can be a problem.

Problems with notes being stolen: Although no notes have been stolen from the surgery, occasionally patients have taken records home by accident. One psychiatric patient took their notes into a side room and set fire to them.

Patients receiving the wrong notes: For reasons such as similar names or misfiled notes, patients occasionally receive the wrong records when sitting in the waiting room.

Family members viewing each other's notes: When seated in the waiting room with their personal notes, it is possible for members of the family to see each other's notes. This can cause problems if one member of the family has chosen not to tell another about a medical issue, e.g. if a teenager is on contraception and has not told her parents.

Most patients choose to look – a minority don't: There is inherent protection: patients do not have to open their notes if they do not want to.

From what age can patients see their notes? Patients are allowed to read their notes from the age of 14. There is concern that they will see information that refers to their parents. Consequently, we may need to screen all records as patients reach the age of 14.

Effect of computerisation

As less information is written on paper, paper access becomes less relevant. There are a number of practices across the country exploring electronic access, and we are hoping to do the same.

We expect to be able to allow access to electronic records in the surgery, via terminals in the waiting room. In order to make this accessible to lay people, we assume that we shall have to alter the format of the electronic record to make it both easy to access and to understand. For instance, we would hope to ensure that there was an electronic glossary to explain medical terms. Any change in format would need to be usable by any GP system.

Although this transfer to computer-based access is likely to be difficult and take time, the benefits to patients are likely to increase.

References

  1. Cowley R. Access to Medical Records and Reports. A Practical Guide. Oxford: Radcliffe Medical Press, 1994. ISBN 1-870905-59-8.
  2. Cassileth B et al. Information and participation preferences among cancer patients. Ann Intern Med 1980; 92: 832-6.
  3. Fisher B, Britten N. Patient access to records: expectations of hospital doctors and experiences of cancer patients. Br Med J 1993; 43: 52-6.
  4. Aitken-Swann J, Easson E. Reactions of cancer patients on being told their diagnosis. Br Med J 1959; i: 779-83.
  5. Quint J. Mastectomy – symbol of cure or warning sign? Gen Pract 1964; 24:119.
  6. Tuckett D et al. Meetings between experts. London: Tavistock, 1985.
  7. Baldry M, Cheal C, Fisher B et al. Giving patients their own records in general practice: experience of patients and staff. Br Med J 1986; 292: 596-8.
  8. Bernstein RA et al. Physician attitudes towards patients' requests to read their hospital records. Med Care 1981; 19: 118-21.
  9. Andersen T, Jorgensen G. Danish experience of statutory right of patients to access hospital records [letter]. Lancet 1988; ii:1428.
  10. Bernstein RA, Andrews EM, Weaver LA. Physician attitudes towards patients' requests to read their hospital records. Med Care 1981; 19:118-21.
  11. Benadt M, Gunning L, Quenstedt M. Patients' access to their own psychiatric records. Br Med J 1991; 303: 967.
  12. Bronson DL, Rubin AS, Tufo HM. Patient education through record-sharing. ORB 1978; 4: 2-4.

Guidelines in Practice, July 2001, Volume 4(7)
© 2001 MGP Ltd
 further information | subscribe