
In July 2018, 350 professionals from the Great North Care Record Network came together to explore their attitudes towards sharing patient data. These professionals were from the health and care sector across the North East and North Cumbria.
This report summarises the feedback. The data captured in the form of discussions and written updates were captured and analysed by an independent academic researcher – Dr Michaela Fay. A copy of this report is available to download as a PDF document.
The Great North Care Record (GNCR) is a new way of sharing medical information across the North East and North Cumbria, which is accessed by health and social care practitioners to provide direct care for patients. It means that key information such as diagnoses, medications, details of hospitals admissions and treatments can be shared between different healthcare services.
The GNCR explores opening up healthcare data to more groups such as social care providers, healthcare planners, public health teams, and researchers.
Healthcare records are a rich, but untapped source of information, which, in the hands of researchers, could bring new insight and discoveries about treatments and diseases. This has not been achieved on a large scale before, as obtaining permission from the public to use their information in this way is difficult. The Great North Care Record seeks to overcome this challenge.
The setting of information sharing preferences within the GNCR, allows members of the public to specify what they want their health and social care information to be shared for. This includes sharing information for research by the GNCR; for care; for research purposes; or not at all.
Preference setting is not the same a patients’ consent to receive care, for example. It is about making an informed and active choice about how, when, and with whom particular aspects of their health and social care information should be shared and for what purposes.
Engaging health care practitioners, service developers and frontline staff in the development of the GNCR and its associated preference setting tools is an important element to making sure it is a safe and useful tool for both patients and health practitioners. Ideally, patient preference setting allows frontline staff to easily and quickly share and access the most relevant patient information at the time it is needed in order to provide seamless and targeted care and develop and design services with seamless and targeted care in mind. Furthermore, patient preference setting should enable trusted clinical and academic researchers to easily access large quantities of research-relevant health data.
The GNCR is co-produced and co-designed with citizens and practitioners. Practitioners’ buy-in and full grasp of the underlying principles and application in practice are essential not only to gain citizens’ buy-in but also to ensure health practitioners, service providers and planners work towards a shared goal.
The Great North Care Record Network has been established to support the development of the Great North Care Record across the North East and North Cumbria.
The Network provides an opportunity for professionals working in healthcare, social care and academia to come together and to help implement the record across the region.
The programme has been established and is led by local health and social care professionals and academics, who are committed to the benefits of better information sharing, in a safe and secure setting.
The network meets on a face to face basis and has an online network – Discourse.
The networking event in July 2018 was targeted at health and care professionals and academics. Approximately 350 participants attended to discuss how permission can best be captured from 3.6million people across the region to share (or not share) their health and social care information for direct care, research and planning.
People working across the health and care sector were invited to attend. This included clinicians from acute, primary care, community, local authorities, IT professionals working in the service and representatives from patient groups and voluntary organisations.
Alongside a conference-style element consisting of stakeholder presentations from a variety of speakers, the event offered a workshop element. This component of the event allowed practitioners to work together and brainstorm ideas. These were then captured and analysed according to the ECOUTER method.
The workshop design was inspired by the ECOUTER method developed by Professor Madeleine Murtagh and team at Newcastle & Bristol universities.
Participants’ ideas and concerns around health information sharing were captured on ‘sticky notes’, which, after then event, were then collated into a spread sheet by Corinne Anderson and analysed for themes by Dr Michaela Fay.
Participants’ feedback was collected with the two-fold aim to:
Specifically, participants were asked two things:
A number of common themes were identified:
The ECOUTER methodology for stakeholder engagement aims to open up discourse and facilitate conversation to capture a range of perspectives while assuming none to be privileged. It is not a ‘consensus’ method so does not seek a final or fixed answer. Rather, it is part of a process where questions are posed to excite and elicit responses.
Broadly speaking, there are four steps to the ECOUTER methods:
Barriers to preference setting and patient information sharing can be divided into two kinds – those on a practical level and those of a more conceptual nature.
Barriers on a more practical level refer mostly to the need to link up health care services and provide users (both patients and health professionals) with the relevant IT systems to facilitate information sharing.
On a conceptual level, workshop participants identified barriers around awareness levels of data sharing, buy-in, organisational cultures, and attitudes toward information sharing, including the need to build trust in IT systems and their use.
Generally speaking, participants support and welcome the idea of a platform that enables them to easily, quickly, and efficiently access patient information and share it with other health professionals and services. As they understand it, such sharing of patient information requires general consent from patients as well as easy-to-use and streamlined IT systems.
The sharing of patient information is seen as a tiered process, both practically and conceptually.
There is a general consensus that sharing patient information with the aim to link up health care services and improve patient care is good and necessary.
“It’s good to share – improves care for the individual + for the future”
“Different systems need to work together”
[Relies on] “Integration of various IT systems”
“access to IT can be 20 minutes from finding a PC to using it properly”
“We have too many different systems that each department cannot access each other’s information”
“Quicker pathways”
“Joined up care + support” based on “simplified electronic solutions”
“Saving staff time if we don’t have to search for information + saving time between touch points”
“Communication with other organisations i.e. setting preference with GP then secondary services being able to access this”
Sharing patient information for research purposes, however, is more complex.
It relies on a culture change both among the health professions and the public.
“What is research – it is so vague that people will opt out because they don’t know what that means?”
Stakeholders felt that the required culture change is likely to only take place if the following key questions are answered:
There are some positive voices among the stakeholders who feel that routinely making patient information available to be accessed as a research database is a good thing and will, ultimately, lead to improved care. On the other hand, most participants were reluctant to embrace the idea of sharing felt that, without appropriate public engagement, many patients would be, too.
“Research is the biggest challenge to succeed in. Why don’t we just get [on] with the rest and park research?”
“Why focus on research now? Move forward with a shared platform”
“Too fixated on research. Need to deliver benefits for direct care. People are far more likely to agree on sharing data for care purposes. The secondary purposes (service planning & research) will come later as trust grows”
“Not for Drug Companies”
“Research needs to be broken down more. Pop Health, drug trials, health data research”
“Public see everyday data being stolen. How do we make the public feel safe about sharing?”
“Research is not the same as non NHS based research – in terms of trust + in terms of potential commercial benefit”
“Patients happy to share data from GP to hospital etc but research?”
There was some discussion around the differences between obtaining patient consent for direct care and preference setting with view to research purposes. The former was considered everyday business, though it come with its own challenges.
“Informed consent – how do we inform without information overload?”
“Patients need to understand exactly what [they are] consenting to – means different things to different people”
“Do staff understand consent?”
“Why does consent have to be overcomplicated? Why do we need to ask for consent within health/health agencies multiple times”?
“Break down the fear of what we can and cannot do as clinicians with our without consent”
Using patient information for research purposes, in addition to direct care and service development, is the area where patient-led preference setting is most important and where stakeholders had more concerns about transparency and workability.
“More information needs to be given to public as to what is going to be shared”
“Communicate purpose of data sharing better”
“What are we telling patients about GNCR? How are we telling them about it?”
“What are you preference settings for?”
“Staff knowledge and understanding first – otherwise they cant’ support patients”
“People assume data IS shared”
The idea of patient-led preference setting is built on a particular vision of an ‘ideal’, highly engaged, and actively involved patient.
IT systems require a certain level of flexibility to reflect the behaviours of such engaged patients.
Some participants were critical of the vision of patients who actively shape the ways in which their health data is shared and fear that this might exclude certain patient populations and exacerbate social divides. They raised several concerns around access and transparency.
“We must not make the health divide worse by making digital platforms the panacea”
“What happens to the people who do not want to use the digital platform?”
“People with limited experience of care, hospital treatment are less likely to understand the need for this”
“How can we make sure IT and screens are in an accessible place. I have been unable to reach three in my GP practice and specialist outpatients. I am a wheelchair user”
“Visually impaired – how can I use the system? Is it visible in my language?”
“What happens to your data if a citizen doesn’t register any preferences?”
“Vulnerable people (not registered)”
“How do we get more elderly included?”
“Could your medial history work against one? In future?”
Stakeholder were clear that in order to develop a culture within healthcare and wider society, several things are required:
Participants are clear that IT systems must be easy to use and the message for information sharing must be clear, simple, and straightforward.
On a structural IT level, participants commented on the lack of interconnected systems. This can often lead to having to ‘reinvent the wheel’ when it comes to finding, accessing, or sharing patient data.
“Too many IT systems being used for successful information sharing”
“true interconnected systems” are needed
“Transportability of data – systems talking to each other, same top level interface”
“IT changes require training, time, organisational change”
A good system saves staff time: “we don’t’ have to search for information + saving time between touch points”
The first step in successful and sustainable information sharing is getting patients online.
[I am] “shocked that we are not collecting emails”
Secondly, IT platforms must be end-user orientated and communicate the ‘how’ and ‘why’ of information sharing plainly.
“Trust Opt in/Opt Out (easy to change, easy to access)”
“Plain English explanations/FAQs”
“Make it easy to do”
“Common language and terminology, Plain English”
“Clear, uncomplicated, commonly used phrases and explanations”
“A single page, plain English description of what the GNCR is, what, why, how”
“Simple for users”
“Clear definition of what is required of the service user”
“Ease of use – simple usernames + passwords”
“Needs to be simple and consistent”
“[Provide] Examples of types of data being shared”
A number of participants had concrete suggestions relating to the technological aspects of information sharing.
“Idea: Highest percentage of technical usage is a smart phone. Why don’t we approach main manufacturers [for] pre-installed NHS app for patient to view [where] their data [is held] etc.?”
“NHS app should use Health Call preference model”
“GP check in kiosks. Set preferences following check in”
“Promote NHS numbers as unique identifiers. Perhaps give people a health card with this like NI number”
When it comes to preference setting, participants felt that a certain level of flexibility is required of IT systems. This includes
“The need to only set your preference once”
“Requires the ability to change your mind at a later date = opt in/opt out over time”
“Opt out for genetic research” – “Opt in for clinical trials”
“Do citizens have the option to opt in or out and change preferences at any time?”
“Easy access to set/change preferences. Clear language (low reading age), simple structure”
“Ask once, apply all”
Some participants expressed surprise that health data is not already routinely shared across platforms and were sure that many patients, too, assume that this is the case.
“Why is this information NOT shared? – [e.g.] oncology patients”
“[We] underestimate our population – they do get it. Store cards – organisations collect their data”
Participants agreed that if IT systems work well, levels of trust and necessary buy-in both from practitioners and members of the public will adjust accordingly.
In addition, many participants commented on the importance of
Protecting members of the public from data breaches was high on the list of concerns voiced in the workshop. Participants were clear that patients, as well as health practitioners, need to be able to trust that information is being used in safe and responsible ways and that data is safely stored.
“How are patients protected from data breaches?”
“Services changing providers of hardware and software must demonstrate robust protection of data”
“who manages and owns the system to do this”?
“Using the internet doesn’t mean trusting the internet”
“Public see every day data being stolen. How do we make the public feel safe about sharing?”
Generally speaking, stakeholders agreed that NHS branding was the easiest way to gain the public’s cooperation and buy-in. Participants were clear that citizens must be assured that the information that is held about them is not for sale, safely stored, and used for and within the NHS with the main purpose to improve patient care.
“NHS branding for trust”
“NHS is NHS that ‘s how public see it”
One key concern was that shared data should only be used for research or care purposes only and not be sold for profit.
“Public concerns about selling data and value”
“People probably won’t want this if they think people may be making money from their data”
“Will opening up access to personal data allow targeted advertisements tailored to my health needs e.g. hearing aids, diabetes?”
“Not for Drug Companies”
Practitioners were clear that in order to successfully and sustainably embed citizen-led preference setting, a culture change among the workforce as well as among the public is required. They identified the following issues:
“Communicate purposes of data sharing better [to member of the public]”
“Share benefits of research ‘what’s in it for me?’”
“Communication is the key to enable trust. [We need] different comms for different areas”
“Staff knowledge and understanding first – otherwise they can’t support patients”
“All staff in all sectors to believe that this is right and safe. It is the norm to share data rather than not”
“Education on what the research will be used for”
Doing this type of engagement work will automatically increase trust among and between organisations and stakeholder groups, which, in turn, will increase the likelihood of IT platforms to be actively and successfully adopted.
For the Great North Care Record to be successful it would need to operate in a manner that satisfied the expectations of practitioners, service planners, and members of the public. These expectations include that:
With thanks to Corinne Anderson, Professor Paul Burton, Annette Chambers, Kathryn Common, Professor Mike Martin, Professor Joe McDonald, Fiona McDonald, Joel Minion, Professor Madeleine Murtagh, Dr Tejal Shah, Mark Walsh, Matthew Walsh, Louise Wilson and all the GNCR Network members and steering group.
Contact details
Dr Michaela Fay (PhD), 28 Eversley Place, Newcastle upon Tyne NE6 5AL
info@michaelafay.co.uk or www.michaelafay.co.uk
Great North Care Record
c/o North East Futures UTC, Stephenson Square, Newcastle upon Tyne NE1 3AS
gncr@ahsn-nenc.org.uk
www.greatnorthcarerecord.org.uk
@GreatNorthCare