How PIES helped to improve understanding about data sharing

Before working in the NHS, I always presumed patients’ medical records were stored on computers for all health professionals to view, until a visit to A&E taught me otherwise.

After being admitted to hospital with a chicken bone stuck in my throat (which was promptly dislodged) I glanced out of the window and spotted a nurse pushing a shopping trolley full of patients’ notes across the hospital car park.

I was surprised that the nurse needed to transport medical records from one hospital department to another – I thought it was all computerised.

But after joining the Innovation Agency and working on the Connected Health Cities project I realised that is not always the case and that not all health professionals have access to your medical history, which is why you have to repeat your details every time you have an appointment.

Surely life would be easier if all healthcare professionals had access to our health data?

Connected Health Cities (CHC) was a £20m Government-funded programme launched in 2016 to address that very issue and use data and digital technology to improve health and social care services for patients in the North of England.

CHC recognised there is huge potential to make better use of information from people’s healthcare records and that by connecting the information and knowledge held by the NHS, social care and other local authority services, we can plan and deliver systems more effectively. 

The ground-breaking project linked academics, clinicians, patients, the public and industry to connect health and social care records across organisations in particular areas and create a Learning Health System. This demonstrated the amazing advances that can be made when we have access to lots of data.

As patient and public involvement (PPI) lead for the Innovation Agency, the Academic Health Science Network for the North West Coast, it was my role to engage with residents in the region, encouraging conversations about data sharing and building public trust by showing that we were using their data safely and securely, to improve care.

One of my first tasks was to create a Public Involvement and Engagement Senate (PIES) to ensure the patient’s voice was represented in the region’s health improvement projects and provide feedback on our CHC areas of clinical focus – chronic obstructive pulmonary disease (COPD), epilepsy and alcohol-related illness.

We recruited members to represent a cross-section of people including professionals, retired people, patients and healthcare workers from across the North West Coast.

We talked to patients in hospital waiting rooms and visited support groups such as Genie in the Gutter and Breathe Easy. We attended events like the Blue Dot Festival and visited cultural organisations including Muslim women’s groups and the Gujarat Hindu temple in Preston.

The PIES members created a survey to gather people’s perceptions of health data sharing while identifying concerns and issues with consent to share data. The responses were a real eye-opener as the survey highlighted a divide between the views of patients and those of other members of the public.

The majority of patients with a long term medical condition said they would share their data with anybody, for research or any other reason to benefit others. Whereas, although other members of the public are happy to share information about themselves on social media and with their supermarket clubcards etc, they were wary about sharing their medical data.

When asked if they would share their data with commercial companies including dentists and opticians, only 61 per cent said they would consent to share their data. When it was explained that companies may include professionals such as dentists prescribing antibiotics, most of the respondents changed their minds to include these professionals but stipulated that they did not want insurance companies, pharmaceuticals or the police to have access to their data. This demonstrates that education is key to allow people to make the correct choice for them.

Most patients thought their data was already shared between all NHS organisations and the NHS was one big, joined-up organisation. When it was explained that this wasn’t the case, they then understood the need for sharing their information.

One of the highlights was when the PIES group worked with health app specialists ORCHA to design a wire-frame or ‘wizard’ for consent to share data on iOS and Android health apps.

They helped to produce a set of carefully curated questions to enable people to select their data sharing preferences.

The wizard has been adopted as part of the consent process for two regional projects with potential for further roll-out in the region; and a PIES member was appointed NHS App Ambassador for NHS Digital, which is exploring how they can use it.

Another interesting project was when the PIES group worked with a composer from the Royal Northern College of Music to create a musical piece to show how health data is being used in harmony with research; this was performed at a memorable event at Manchester Museum.

But my proudest moment was when our PIES group won Outstanding Contribution to Patient and Public Involvement at the North West Coast Research and Innovation Awards, earlier this year.

The CHC programme has now come to an end but I feel confident that, as a result of PPI activities we carried out in the NWC, many people are more aware of the importance of giving consent to share their data, to help with research and to improve treatments for their own conditions.

Remember #DataSavesLives.

Debbie Parkinson, Innovation Agency PPI Lead
@talktodebbie  @chcnorth

www.connectedhealthcities.org/
www.innovationagencynwc.nhs.uk/connected-health-cities