Cancer Mum – The battle for better patient access to medical records

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Digitising health records is one of the key aims of the GP Five Year Forward View. In Jeremy Hunt’s statement in September 2017, he passed the baton to patients, announcing the era of ‘patient powered health’ – encouraging patients to access and manage their own health records through digital healthcare technology. For many, the reality of ‘patient powered health’ is that it’s a huge challenge to get access to your own record and keep all your medical information up-to-date in one place.

One health campaigner on Twitter, @CancerMum, shares her story and how she’s struggled to gain access to her family’s and her own medical records, which is hugely beneficial to managing their health conditions.

The need for patient access

I am a carer for my son who is a young adult cancer survivor. Following his treatment, he has numerous acquired disabilities, including severe memory loss. I also manage a long-term health condition of my own. We need access to our medical records to organise and coordinate care from several different health providers. Equally, we also want to ensure that the information held about us is accurate and complete.

However, there is resistance to allow patients like us access to our full online record, which is extremely frustrating. I’m passionate about raising the profile of patient access to medical records so that more people are aware they can apply for access and discover the associated benefits.

The postcode lottery of patient access

Although patient access to Detailed Coded Medical Record (DCMR) is part of the GP contract, there appears to be a postcode lottery across NHS England as to whether surgeries advertise this service. Some practices refuse access, saying they haven’t got the technology in place, which is incorrect. Current regulations state there is a minimum data-set that must be provided on request. You should be able to make doctors appointments, prescription requests, change demographic details, access test results, and see your DCMR.

On the other hand, some practices embrace the concept of patient access to medical records. They go further than the regulations, giving their patients access to their full medical record online. Because of this, they can see all information written about them in letters and consultations. This enables people to manage their care more effectively, working in partnership with doctors when making decisions. Consequently, this collaborative approach fully informs patients about their medical condition.

In London and other parts of England, there are GP practices who give full patient access readily. In contrast, others choose not to do this and restrict the information.

Patient access denied

My GP practice gives access to the DCMR only on request, and access to historical letters is date-restricted. The practice doesn’t advertise or promote GP online services, whilst many patients don’t realise they can ask for this service. New technology hasn’t been adopted, so all communication must be in-person, by telephone (hopeless) or post. Equally, the practice issued a position statement expressing that they wouldn’t allow access to full medical records online unless regulation forces them to do so.

The practice continually refuses my son and myself access to our full medical records which would benefit us. We feel that this is unfair, as over 200,000 people in England have that access. Our only option is to submit a Subject Access Request to obtain a copy of the information, costing £50. This scenario is replicated all over the country. In fact, I have been contacted on social media by over 80 people, who are all refused basic DCMR access. Clearly, there is a significant breach of the GP contract across England.

Awareness of patient choice

I started to use Evergreen Life’s app after a GP recommended it to me at an event I attended. He mentioned that I could record my own information within the personal health record, as well as connect to my GP record. Evergreen Life provides the best solution for us. Not only can we view our limited GP medical record, but we can also add important information from our full paper record. We can add lots of information from other health providers, storing it all in our own online health account.

Recently, a family member applied for medical record access. From this, we realised that practices steer patients towards using the EMIS app because they use the EMIS GP system. Practices even direct patients away from other apps with NHS-assured services like Evergreen Life by deleting them on application forms. Essentially, I think there is an education piece to be done within practices, highlighting there is a choice for patients. Practice staff should also be helping patients gain access to their record within the app they want to use.

Lack of patient access is a risk to safety

Whilst the process of gaining access is frustrating, what’s even more disheartening is the lack of understanding and compassion I have experienced. Generally speaking, people don’t appreciate how much this lack of information impacts our daily lives.

I have four A4 lever arch files filled with all my son’s information. I’ve collated this data from various healthcare environments, across several locations in Britain and Europe where my son has received treatment. The GP record doesn’t contain a lot of this detail. Yet, we want access to the existing record, so we can guarantee that relevant history is included. Importantly, my son’s memory difficulties mean he has a poor recollection of his medical history. Therefore, an online health account will considerably benefit him in the future when I am no longer able to manage his care.

There are many organisations which require medical evidence to adjust and provide care for him. Additionally, he needs access to his health data, so he can pass it on. Without this information is up-to-date and complete, I believe there’s a risk to his safe and effective care.

Personal health record – taking back control

Between trying to gain access to my records in October 2016, to discovering the Evergreen Life app in August 2017, I’ve collated more information about my healthcare in one month than I’ve been able to get from my GP in a year. I record my own medications, I buy my own thyroid test kits and record my results in the app. As well as this, I store all my documents within the documents storage within my app. In summary, I’m creating a complete personal health record, which is now more comprehensive than the one held by GPs.

My experiences with the GP service encouraged me to manage my health independently. There’s a potentially huge demand for apps that enable people to take control of their own health information. I’m starting to build my son’s health account by using all the information we have in our files.

Losing Patience

The continued refusal of patient access shows a complete lack of empathy, which is not representative of patient-centred care. The aspiration to educate society to use the NHS wisely is unachievable if people are not empowered with their own health data. People should better understand their conditions, and acquire the knowledge to engage in partnership decision-making with their medical advisors.

I know that there is a culture to be challenged. I believe there’s still a significant paternalistic section of General Practice that continues to oppose access to health records to the detriment of patient care. Until regulation forces practices to change, there’ll be no progress for service users like my son and myself. The development of intelligent and linked health apps will contribute to a better system and transfer control of patient data to service users who want it.

We’ll be keeping in touch with @CancerMum and sharing updates on her journey to better access to her family’s health information.

Take back control today

If you want to take more control of your health, well-being and fitness, download the Evergreen Life app. You’ll have all your health information within the palm of your hand, and be able to make better-informed decisions when it comes to your own health.

Written by
Evergreen Life

Article updated:
January 8, 2019
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