Patient Experience Research Centre

This blog is part of a series showcasing the People’s Research Cafe which took place on the 18th and 19th June 2022 in South Kensington, London as part of the Great Exhbition Road Festival.

What is a People’s Research Café?

The People’s Research Cafe is a café with a twist. Visitors are welcomed to sit down at a table co-hosted by an Imperial College researcher and a public contributor whose role is to help the conversation flow freely. Over a free hot drink, visitors find out about the researcher’s project and will be asked for their opinions on it. The researchers are then expected to use this feedback from visitors to improve their projects. The People’s Research Café has been run previously at two Imperial Festivals (2018 and 2019) and also in four community venues. It was previously called the “PPI Café” and you can read about the one at the Imperial Festival 2018 here.

When did this People’s Research Café take place?

A People’s Research Café was hosted at the Great Exhibition Road Festival held on 18 and 19 June 2022 and was a collaboration between the following teams/centres: Imperial Biomedical Research Centre, Imperial Clinical Trials Unit, Imperial Clinical Research Facility, London In-Vitro Diagnostics Cooperative, NWL Applied Research Collaborative, MRC Centre for Environmental and Health, HPRU in Healthcare Associated Infections and Antimicrobial Resistance. Researchers from each centre were given the opportunity to apply to host a table at the Café for 2 hours where they would explain their research in plain language and ask visitors 3 questions with the help of a public contributor. It was requirement that the research project was at a stage where visitor feedback could still influence the project. Researchers and public contributors were offered training about how the Café would work and how to maximise conversations with visitors. Ahead of the Café, researchers refined their plain language summaries and three questions to pose to visitors with the help of public involvement leads and a public contributor.

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In conversation with: Dr Bharadwaj Chada, Harvard HealthTech Fellow, former National Medical Director’s Clinical Fellow, NHS Transformation Directorate

 

What research project did you bring to the People’s Research Café and what is it about?

My project is about how digital systems may either contribute to, or improve, patient safety incidents in hospitals, and assess the risks presented by digital technologies.

It is now common for patients to use technology in managing their healthcare, for example to book medical appointments, have virtual consultations, or simply access their medical records. Healthcare staff are also increasingly using digital systems in patient care, e.g., to prescribe medicines, access test results, and communicate with one another. All of these digital systems may help in building safer healthcare systems overall, but may also pose risks to patient safety, for example during system downtime when staff are unable to access time-critical patient information, losing data when migrating to new IT systems, or due to a lack of training around the use of digital systems.

 

What questions did you ask visitors to the People’s Research Café about your project?

The questions I asked visitors are as follows:

• What do you think the most common patient safety incidents might be in a hospital setting?
• Can you think of ways in which digital healthcare systems could affect patient safety? (either where digital systems contribute to unsafe care, or stops unsafe care taking place)
• What have been your experiences of using digital technologies as a patient or relative? Do you feel confident in reporting these technologies if/when something goes wrong?

 

 

What did visitors tell you?

As the afternoon progressed, a few key themes began to emerge, which will have an important bearing on the direction of this project

Using a common language

The first one was that ‘patient safety’ and ‘digital technologies’ were quite abstract concepts in people’s minds. Although patient safety has been defined in the NHS Patient Safety Strategy this obviously isn’t a document read by the general population. In this strategy, patient safety is defined as the “avoidance of unintended or unexpected harm to people during the provision of health care”.

Similarly, there isn’t really a definition of ‘digital technologies’ in the healthcare context that’s readily available, and so it’s also important to identify and use an accessible definition of ‘digital technologies’ in healthcare. Visitors sometimes found it difficult to identify digital technologies which related to their health, particularly those visitors who did not have experience of working in healthcare. The vast majority  were quick to point to the NHS App and accessing their health record online, which is perhaps unsurprising due to the popularity of the NHS App over the course of the Covid-19 pandemic.

Advantages and disadvantages of digital technologies

When visitors were given examples of digital technologies, including electronic health records, people were generally in favour of their use, and identified a number of advantages. These advantages included improved monitoring and surveillance of their health, more accurate record-keeping by health care providers with fewer errors, more efficient health services, and the potential for digital technologies to facilitate patients to be empowered about their own care. However, these benefits were contrasted with concerns over cybersecurity and the perceived commercialisation of their data. One visitor described these conflicting perspectives as: “(I’m) in favour of accessing (my) electronic health records but concerned about my confidentiality or being ‘judged’ on the basis of my medical records, for example by my employer or insurance companies”.

Barriers to reporting patient safety incidents

A key barrier that surfaced repeatedly was the difficulty in reporting patient safety incidents, for both clinical staff and members of the public. One individual, who had been struggling to reconcile his health record after being mistakenly issued with two NHS numbers said, “… even if I do raise a complaint, I don’t really get any feedback on whether it’s being dealt with or not, so I think ‘what’s the point?’”.

Similarly, a pharmacist visitor, when asked about their perspective on patient safety incident reporting, suggested a possible improvement, “… the process of incident reporting needs to be made more straightforward, for example, by automating data entry where possible – what was the temperature at the time of an incident, were there any drugs recently dispensed, who were the staff on shift?”.

Health inequalities and the need for patient advocacy

It was also interesting to note how often patient advocacy and health inequalities were brought up. On several occasions, the importance of patient advocates (including groups such as ‘Use My Data’ and ‘Understanding Patient Data’ which advocate on behalf of patients, and also patients advocating for themselves) and authority figures (e.g.  GPs) in navigating an increasingly digitally enabled health system was raised. These groups will have a role to play in ensuring the use of patient data is fair and proportional to clinical need, public awareness about key concepts such as data anonymisation and Artificial Intelligence (AI) is increased, and concerns about digital technologies are flagged and addressed in a timely manner.

Some visitors were also concerned about the potential for technology to leave less digitally literate individuals and those who are digitally excluded behind, and worsen health inequalities:

“… you might get worsening health inequalities if reporting is left to individuals. It’s important to having an authority figure mediating, like the MHRA Yellow Card Ambassadors”

“… digital has the potential to make a big difference, but it’s important to keep in mind patients’ abilities – some people may not be able to use apps, for example”

“… health literacy is impacted by many factors such as social deprivation, so it is important to take that into consideration so as not to perpetuate health inequalities”

 

How will what visitors told you impact and/or change your project?

There are a few key takeaways for the project from the Café which are summarised below:

• It is important that accessible and understandable definitions of ‘patient safety’ and ‘digital technologies’ in healthcare are identified and used.
• It is integral for this project to continue public involvement and engagement (PPIE activities). We recently established a ‘Public Reference Group’ (PRG) recruited through NHS England with 5 members of the public from a variety of backgrounds who are enthusiastic about patient safety and collaborating with the NHS. We recently held our first induction session to provide an overview of the project, and give the group a chance to hear from a current NHS England patient and public voice (PPV) partner.
• It is important that the findings of this project, and other projects like this, are disseminated as broadly, and using as many channels, as possible (e.g., by taking advice from our PRG about how best to do this), and also by working with patient advocacy and community groups.
• In order to address digital exclusion and worsening inequalities we must work closely with community groups which are representative of our population
• Barriers to reporting patient safety incidents must be reduced, for both patients and healthcare staff. For example, automating aspects of the reporting process for healthcare staff. “Automating” refers to automatically inputting data about a patient safety incident (e.g. the time the incident took place, the patient’s vital signs at the time, whether any drugs were dispensed recently, the staff that were working at the time, and what the temperature of the ward was etc). This will provide as complete a picture as possible without the need for manual data entry of these aspects by the person making the incident report. Another barrier to reporting patient safety incidents which could be addressed is standardising the way these are reported, as there are currently several channels for reporting patient safety incidents (depending, for example, on the type of incident, the staff member doing the reporting etc). This needs to be streamlined into as few reporting channels as possible (e.g. doctors and nurses typically use a local risk system, such as Datix for incident reporting, pharmacists may use another system to report prescribing errors etc).
• I left the Café with an understanding that the challenges that healthcare staff face in the digital safety and incident reporting landscape is very different to those that patients face. In time, this could pave the way for another research project specifically looking at patient perspectives

 

What was your personal experience of taking part in the People’s Research Café?

I thought the Cafe was invaluable for ‘sense checking’ my project and to obtain insights that we may have been otherwise overlooked e.g., the fact that people did not really understand what we meant by “patient safety” and “digital technologies”.

The afternoon saw a good mix of the population attend, across ages, genders, and ethnicities. There was also a good split between individuals working in healthcare and those without healthcare backgrounds (both of which are very important to my project), and it was interesting to hear the perspectives of these various groups.

I am grateful to the many visitors who attended our table for their valuable time and thoughtful insights as well as the public contributor who helped with conversations and note taking.

 

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