DECODE: Exploring the unintended consequences of digital health tools

Project aims

To understand the consequences of using digital health tools in primary care, we:

• reviewed the existing research on the unintended consequences of digital health tools
• interviewed patients, GPs and practice staff on their perceptions and experiences of digital health
• carried out workshops with the groups above
• developed case studies on:
  • online GP consultations
  • online patient access to medical records

What we did

We held a workshop in 2018 with members of the public, technology developers, GPs, and researchers to help identify what to consider in our study.

Our literature review focused on the unintended and apparently unanticipated consequences of the use of digital health in primary care. This included alternatives to face-to-face consultations and access to electronic medical records.

In the interview study, we talked to 23 general practice staff and 22 patients who used online consultation tools or online access to health records across eight GP practices in the southwest and northwest. These interviews took place in 2019, before the COVID-19 pandemic.

We held a second workshop in February 2020 with GPs, policymakers, members of the public, and researchers. We discussed our findings to get their input on how to interpret them. We distilled them into guidance on how to avoid unintended consequences.

How we involved people

The project team included two members of the public who helped develop the analysis and interpret the findings.

What we found and what this means

In the interview study we found real-world experiences of the consequences of online consultations and online patient access to health records.

Online consultations

For some patients, online consultations improved access to care and were convenient. This was particularly the case for patients who felt they could express themselves better in writing. Some patients valued submitting enquiries at their own convenience and for simple enquiries that didn’t warrant a face-to-face appointment.

However, online consultations made it difficult for some patients to communicate effectively with a GP. The structured questionnaires used in some systems were hard work for simple enquiries. When patients were allowed to write freely, some struggled to explain their issue. Patients weren’t sure if they were writing to their own GP or someone else and had concerns of who would read their enquiry.

To ensure patients with limited IT access or skills could still access care, some practices allowed staff to complete an online consultation form for them, over the phone or in person. However, this was time consuming for staff and could compromise patient confidentiality.

For some GPs, online consultations were valued for giving greater flexibility in managing patient care and staff working patterns. However, for others online consultations generated additional work and led to staff dissatisfaction. Poor quality or incomplete information meant patients needed to be followed up with a telephone or face-to-face consultation, which could duplicate work. Some GPs felt that spending more time in front of a computer processing enquiries resulted in ‘call-centre medicine’ which was tiring and isolating, and meant less time physically seeing patients.

Online patient access to health records

Online access to health records could have negative unintended consequences for:

• Patient autonomy
• How GPs document things in a patient’s record
• GP practice workload

Online access negatively impacted patients’ control over and understanding of their health. For example, if patients discovered information that was surprising or difficult to interpret.

It also impacted how GPs documented things. Sometimes, this could help patients, such as when GPs tried to avoid potential misunderstandings. In other cases, it negatively impacted the quality of the record if GPs avoided documenting their speculations or concerns. This could have legal and patient safety consequences.

Contrary to assumptions that practice workload would be reduced, online access introduced extra work. This included managing and monitoring access and trying to prevent possible harm to patients.

Our study shows that, to have the desired effects set out in NHS policy, work is needed to prepare records for sharing and patients about what to expect.

In many cases the unintended consequences of using these tools are foreseeable and can be, at least partly, avoided. However, avoiding unintended consequences requires funding and planning.

BJGP podcasts about DECODE

Professor Jeremy Horwood spoke to the BJGP podcast about the unintended consequences of online consultations and patient access to online medical records.

BJGP videos about DECODE

Watch the videos from Professor Jeremy Horwood’s BJGP podcasts about DECODE’s findings.

What next?

We have examined the implementation of remote consulting following the COVID-19 pandemic as part of the RAPCI project.

We are now investigating the impact of remote consultations on NHS clinicians.