Core information standard: Reports

Answered: 835 Skipped: 175

The concerns raised were grouped into themes. The chart below shows how often they were mentioned as a percentage of the total comments.

Key:

• Comms and understanding – health literacy/ accessibility, public engagement – purpose/benefits of information sharing etc.
• Culture – working practice, habits, clinician priorities, lack of change etc.
• Info overload – too much to read given clinicians' heavy workload, important information buried etc.
• Information governance – security, unauthorised access, GDPR, selling of data for profit, data leaks etc.
• Ownership/consent – informed consent, patient held, patient granted access, information belongs to the patient
• Quality – accuracy, inconsistencies, error, interpretation, out of date etc.
• Safety – confidentiality, safeguarding, sensitive information
• Systems and methods – IT, investment, lack of interoperability, system crashes, breadth of consultation, information model etc.

• Information governance was the most commonly cited concern overall and from each group of respondents when analysing their responses individually. There was fairly widespread concern regarding the sharing of data with wider industry for commercial exploitation, in particular health and holiday insurance companies and financial institutions. 36 respondents directly mentioned concerns about the sale of data. A small number of respondents commented that the rigours of GDPR and IG were a barrier to successfully sharing information (or were used as such). People who use services were the group that most frequently expressed concerns over information governance, with 61% of these respondents mentioning information governance concerns in their responses.
• The second most cited concern for GPs, pharmacists, vendors, people who use services and their carers was the quality of the information shared. How to identify the source, accuracy and timeliness of the data came up numerous times.
• The second biggest concern for nurses and midwives was systems and methods.
• The second biggest concern for social care professionals was ownership and consent.
• Doctors, midwives, social care and mental health professionals were interestingly less concerned with information overload.

A number of themes emerged from the qualitative analysis:

Information Governance and Security A common theme was expressions of concern about:

• Information governance
• GDPR
• Cyber security including security breaches, unauthorised access, and data being hacked

Data Quality Concerns were also raised about potential data quality issues including:

• How to identify the 'source' of data, how to determine the accuracy of data if held in different systems, and how updates would be refreshed
• How to ensure the timeliness of data and ensure it was the most up to date
• What if data is missing?
• Who is accountable for the accuracy of data?
• Who has entered the data?
• Individual's ability to point out inaccuracies and have them put right
• Concern was expressed that if patients were uploading data, e.g. blood pressure, how could its accuracy be assured?

Data ownership A number of respondents were keen to emphasise that the individual, not the system, owned the data.

Information access Several common themes emerged regarding information access:

• access should be on a role-based 'need to know' basis
• individuals should have the right to restrict access to information
• individuals should have access to all their information
• individuals should be informed about who has access to their information, and who has actually viewed it
• concerns were raised regarding accessibility to information for those with learning disabilities, dementia and older people
• the requirement to have safeguards to prevent healthcare professionals accessing patient information for whom they are not clinically responsible.
• Clarification of GDPR rules. What about in an emergency situation? Breaking the glass?

Consent Several common themes emerged regarding consent to share information:

• How will consent to share data be approached? If patients have the right to restrict access to information, then consent needs to be considered flexibly and not as 'all or nothing'
• If patients do not trust or have confidence in the system, they may withhold consent, or withhold information, either of which could compromise safety
• Capacity for consent
• Potential for patients to be coerced into sharing data that they do not wish to
• Will multiple healthcare professionals all have to ask for explicit consent from a patient?

Effective communications and engagement

• A common theme was that there was a need for effective communications and engagement to gain public and patient confidence and trust in sharing information.

'About me'

• The comment was made that 'about me' should be the cornerstone, and that a person-centred approach should be adopted.
• Conversely, the comment was made that the approach should be to prioritise clinical benefits over patient access and self-management.

Retaining clinical context

• Several respondents identified that data without context may at best be meaningless, and at worst may compromise safety. There is a need for provenance and for supporting information.

Documents Transfer

• The requirement to be able to transfer documents is considered key and is linked with context.

Information overload

• A common view was expressed that there was a fear of information overload if important information is not made easily accessible.
• There was also a concern raised that critical information might be missing.

Meaningful for people and professionals

• The view was expressed that information must be meaningful for people who use services as well as professionals. Health literacy will vary, and complex terminology will not be understood by some people who use services.
• A need was also identified to train professionals in how to populate information to avoid confusion.

What is core information?

• There was confusion over what should be core information.
• The view was expressed that this definition of core information was aspiring to be comprehensive and not just essential information.

"Patients/people receiving care understanding what they are sharing and for what purpose and can easily and securely express and change their preferences on how their data is used. • Ensuring security and appropriateness of access • Willingness of health partners to share. • Understanding of GDPR 'vs' patient confidentiality. • Making sure it is easy for frontline staff to access the information- any additional barriers will prevent staff from accessing the information. • Driving information system development from a purely technical / digital strategy perspective not addressing care outcomes, will reduce shared data use and access to shared information. • Ability to fund the necessary skills training, care pathway developments, integrations and system supplier costs. • Data sharing is a people issue; it won't just be delivered by new software and hardware. • Silo working in care organisations focusing purely on internal operational needs creates inconsistent data standards and interoperability between key parts of the care economy" (Local authority - commissioning and social care professional)

"Integration will be slow and impeded by lack of interoperability between systems, IG requirements, cost and training time to implement" (Pharmacist, acute hospital)