Core information standard: Reports

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• Carers and midwives were the only groups from which a minority of respondents thought that people contributing to their own record would cause issues. Most carers said they were unsure, and midwives were split, with 33.33% responding yes, no and not sure.
• Allied health professionals, patients, pharmacists, doctors and GPs foresaw the most issues with people contributing to their record. GPs were the most worried with 82.76% expecting issues to arise as a result of people using services contributing to and sharing their information.

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A number of themes emerged from the qualitative analysis:

Data quality / accuracy Quite extensive concern about how the quality and accuracy of data entered by individuals could be validated. Concerns were expressed about:

• Capacity to enter accurate data in particular regarding mental health issues, learning difficulties etc. Need to assess person's competence.
• Person entering incorrect information which might result in a practitioner making an incorrect judgement.
• Information may be out of date.
• Particular concerns over patients entering medical data e.g. blood pressure incorrectly whether by accident or design. In the former, where does clinical responsibility lie? In the latter, for example, a patient may think they will get a better response if they were to exaggerate. Will clinicians need to validate data entered by patients?

Information which may cause anxiety

• Concerns were expressed that it may cause undue anxiety to patients were they to access information which had not been shared with them by their healthcare professional, e.g. test results which were outside the norm.

Inequality of access

• Concern was raised about those who might not have access to computers, e.g. the elderly, or those who might have learning difficulties.

Information sharing - what next?

• Concerns were expressed that this would increase workload as, if information is shared, someone has to read it.
• In addition, if a person enters data, is a professional expected to respond? This might range from a person stating that they had suicidal thoughts, to a delay in seeking help as the person had entered information which they might think would elicit a response, to the 'worried well' providing excessive information.

Vulnerable users

• Concerns were raised about at risk or vulnerable patients being manipulated by others, in particular safeguarding issues where the person causing the risk might access information about the at risk person.

Health and social literacy

• The use of complex terms, terms with specific meaning and acronyms etc. in both health and social care may be problematic for people accessing their information and this needs to be addressed as an implementation issue.

"A lot of information is open to interpretation by the reader, so the need for further explanation might arise and introduce delay, confusion or waste. However, I believe that the probable benefits outweigh the possible risks. Also, as a patient, I have seen how interpretation of information has led to poor communication among healthcare professionals. The patient/carer can act as "glue" when given access to their own information. And as much as professionals believe that they have communicated fully with patients, the truth is that patients often are not given full information about themselves. Some patients, of course, don't want this. I certainly do." (Person using services)

"A concern that when I contribute to my record - add something - that HCPs won't read it or action it. Currently I use the online prescriptions service, but my practice never reads any of the comments or questions I put in the free text box. They've told me that they don't have the time to read them." (Person using services)

"However big transformation needed. GPs in particular seem to be worried about capacity to read information and act on it. We need to be clear with patient / citizen which of their information we will act upon as soon as we receive it v that we will act upon at their next appointment when we see them. We also need to put good informing in place.. not ask for consent. (Commercial lead / digital consultant shared care record)