Individuals are becoming increasingly aware of their rights to access their data and the benefits of them owning and controlling a copy which they can use. Since the introduction of the EU’s GDPR data protection legislation in 2018, there has been a rise in the number of enquiries and complaints to regulatory bodies regarding access to information.
Many sectors and organisations have digitised to the extent that they provide routine electronic access (such as in banking and retail) but healthcare remains behind the curve.
While some healthcare organisations have pressed ahead, it is clear there is a great deal of inequity of access when it comes to health records, data and both on and offline services.
Digi.me is on a mission to empower individuals with data from across their lives, including a strategic focus on health. As part of this initiative, we are establishing a health community to explore best practice around the role of personal data.
Earlier in May digi.me held its first of a number of UK patient focus groups to explore issues and test the digi.me NHS approved digi.me Private Sharing™ platform.
Our latest initiative, a digi.me patient record access Twitter chat, aimed to explore some of the more general opportunities and issues when it comes to patient record access, by asking key questions such as:
- What is your motivation for wanting access to your record and how does it benefit you?
- What information in your record is most important/relevant to you and why?
- What would you like to be able to do more of with your health data?
- What needs to change in healthcare to empower patients?
The chat brought together like minded individuals to tell their stories with some very powerful and personal messages. One key and recurrent theme we hear is that patients are increasingly aware of the challenges in healthcare, recognising their rights and wanting more agency over their destiny:
Also #healthrecordaccess we need the security of having our own data so we can manage a health crisis anywhere in the world. If we have our data to share we can increase the chances of safe efficient care #Q1
— Cancer Mum (@CancerMum) June 12, 2019
A1: Consider patients under stress in appointments & hearing unfamiliar terminology: they aren’t going to remember everything they need to make meaningful decisions about their care. #informedconsent#healthrecordaccess
— Patient Critical Co-op (@PatientCritical) June 12, 2019
Individuals, as expected, also have a variety of needs and desires depending on their own personal circumstances and it is clear that there will never be a one size fits all solution. The recent announcement that the NHS App was being scrapped is perhaps a sign of heightened health service awareness in this area.
While GP record access is helpful to some, those with more complex needs often require access to a broader spectrum of health information.
It is also clear that there are some concerns among those working in healthcare, and there is a great deal of education needed to understand the rights of patients and what is possible. We can draw a lot from studies such as the US Open Notes Programme, which has addressed many of these issues and reflected a clear message from patients. This also came across in our Twitter chat:
— Jennifer Skillen (@cyberjennifer) June 12, 2019
There needs to be cultural change which sees an equal partnership between clinician and patient. Patients who want to be actively involved should be offered full access to all their data w/out paternalistic judgements. #healthrecordaccess #Q4
— Cancer Mum (@CancerMum) June 12, 2019
Many patients want a more active role in their care and to have a seat at the table, and healthcare needs to respond to this challenge. While it is important to allow those who want to be more involved in their health care to do so, we must not forget those who are not willing or able to do this.
There were so many powerful messages it is difficult to capture them all. We would like to thank to all those who contributed. We have captured the Twitter chat in a “Moment” and you can see more of the tweets by following #HealthRecordAccess.
This was the first Twitter chat run as part of the health community and it was a great start to this conversation with some strong stories and a total contributor reach of 295,949 with over 580,592 impressions on Twitter. More will follow.
Digi.me is currently working with a number of partners to enable a global eco-system of apps and services which enable patients to do more with their data and provide a trusted and transparent means for healthcare services to “prescribe” technology to patients.
While most of the technology is now in place to enable the rapid adoption of a patient-centric eco-system within the UK NHS, it is clear from the conversations on the ground there is a lot of work to do when it comes to education and awareness.
To address some of these issues, digi.me would like to invite patients, industry and healthcare representatives to participate in a range of engagement activities exploring this ground up patient-centric initiative.