Fereshta Qayumi, Senior Healthcare Consultant at Gemserv, explains why building trust of the workforce and public is a priority for a safe and transparent roll-out of GPDPR scheme.
FEW relationships in the NHS are as important as the one between us as patients and our general practitioner (GP). For most of us, our family doctor will be our first point of contact for health concerns, and a gateway to more specialist advice through other parts of the health service. Trust sits at the very heart of that relationship. We trust our GPs to apply their wide range of knowledge and experience to our everyday ailments and to know when to refer us to their colleagues.
This trust has been put under pressure in recent weeks due to concerns over the rollout of NHS Digital’s General Practice Data for Planning & Research (GPDPR) in England. These concerns have been shared by our doctors, politicians, other patients and even the Information Commissioner. Our doctors are concerned that we have not had enough time to understand the scheme and its benefits to make an informed decision, nor how to opt out. A poll carried out by our team in Gemserv reached the same conclusion, with 47% of respondents saying more consultation was needed.
Last week’s decision to delay the start of the data collection scheme from 1 July to 1 September created the opportunity for NHS Digital to win our trust and raise awareness of the scheme’s benefits before focusing on the roll-out.
How will the new system use our data to save lives?
Our current data collection system requires replacement – it is more than a decade old. But what will the new system do? The new system will extract certain pieces of data from our GPs’ patient records and use it to help the NHS in its planning and research. They need to gather information about us on a population-level scale, which will help researchers to find the best treatments and strategies for a range of diseases that we suffer from, and to plan for the services we will need in the future.
For this, they need information on our appointments, treatments, and referrals to hospitals. We would also have to share information on drugs prescribed, diagnostic tests performed, and mental health. It is, however, promised that GPDPR will not take our whole records, but instead will pseudonymise information before it leaves the GPs’ surgery. So, essentially, we cannot be directly identified, but our information would still be useful to researchers.
What are the principles of data sharing and why is it so important?
We can all agree that data has been key during the pandemic, not only in the UK but worldwide. Our data from GPs, for example, was crucial in identifying which treatments were effective against Covid-19 through the University of Oxford’s Recovery Trial. Even determining which one of us should get our vaccinations first was guided by population data collection. No data would mean no Joint Committee on Vaccination & Immunisation’s priority list.
Nevertheless, we need to feel confident in how our data is used – at all times. Any misgivings or misunderstandings surrounding the scheme, or any other scheme, should not impact the trust we place in our health care system. Data does indeed save lives, but we should not have to hesitate when seeking treatment over concerns about how our personal information will be used. This is where principles of data sharing come into play.
We at Gemserv, as GDPR experts across a range of industries, from healthcare through to energy, have learnt that the principles of data sharing must be at the forefront of any data strategy delivery. As a core principle, full transparency of the whole data sharing process must be provided. All of us need to be made aware when our data will be extracted, the explicit purpose for which our data will be used, how our data will be used once it is accessed- both now and in the future. Once this is clear in our minds and we have been given enough time to process and retain this information, we can then weigh the benefits against the risks and make an informed decision whether we are comfortable to share our data or not. These principles must always be adhered to – no excuses!
What can be done to build and sustain our trust?
We trust our workforce and their ability to make decisions that benefit our present and future health. A product or process without buy-in of our people, has never made it far in health care. So, what should NHS Digital focus on now? They should prioritise building the trust of our workforce in data sharing. How? By engaging and consulting with our workforce, empowering their voices throughout all stages of the development process- as early as concept development to as far as the roll-out stages. Not only for this scheme but for all future schemes too!
How will this help us as patients? As our workforce play a more engaged role in GPDPR and become advocates for the scheme, they will in turn encourage us to actively seek information about data sharing, take our time to process this information and make informed decisions. We will start to feel that we have the support of our workforce whom we can rely on for guidance and support – slowly but surely that trust can recover and strengthen.
Equally as important, NHS Digital can reach us through other channels too. For example, in the era of social media, we can be reached through social media advertising campaigns, television campaigns, college and university information evenings to spread the word about the benefits of sharing our pseudonymised patient data safely and how we can opt out.
The delay – a golden opportunity
NHS Digital should consider the delay for the roll-out as an opportunity. An opportunity to engage with us and involve our workforce throughout all stages of the development process; to refocus on building trust of our people before focusing on products or processes. All stakeholders need to come together for a shared sole purpose – to create and roll-out what is best for us as patients. The earlier this opportunity is taken, the safer and more comfortable we will feel to share our data securely.
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