‘Can I have my record please?’

Only a few years ago, conversations around ‘who owns the patient record’ were not such a big issue, nor as widely discussed. If anything, it rather related to physician data ownership than recognising the voice of the patient. For a long time, I never even knew that I could ask for access to my record, or that of my children, let alone demand access to it!

I have full control over my personal bank account; I can access it wherever, whenever. I can use most ATMs worldwide, or even do banking whilst paying for my milk. My card, my bank app and online accounts give me the freedom to bank with ease whilst being 100% informed and up to date – what bliss! It is simply preposterous that I never knew I could demand the same for my health and well-being.

The new reality is that we, the consumer, will be managing our own health records. We will be given the opportunity to navigate the health care system at last – see provider options, choose who we will make an appointment with, possibly rate providers and their service (at last!), be allowed to make more informed choices around the plans of care we embark on, share experiences peer to peer as well as motivational encouragement, whilst also understanding health insurance benefits and costs. But how far away from this new health ecosystem are we currently?

Healthcare needs to adopt and learn from other industries how to personalise care and interlink healthcare experience.

Too often, our care is not well coordinated. Providers do not cross over; rarely ensure that proper communication or data sharing occurs. We do not readily have access to unbiased research we can trust, showing us which treatments are most effective, which medications could provide which benefits or possibly effect us negatively. Everyone seems to assume the new expensive drug or treatment is the way to go, because the Dr said so, or was it just Big Pharma propaganda? Financial kickbacks? How did it affect my peers on a similar health journey as myself? How did others experience the care from this particular provider putting me on this care pathway? Actually, thinking about it, where does all the money go?

A study from the Institute for New Economic Thinking published in May 2017 states that Americans now spend over $3.3 trillion a year on healthcare, roughly $10.000 per person per year [1]. The statistics also suggests that one in every three dollars go to unnecessary tests, over priced drugs and treatments that provide little or no benefits at all. This waste disaster was substantiated through nearly three decades of research by Doctors at Dartmouth’s medical school [2]. Others, including McKinsey, the New England Institute of Medicine, and Dr. Donald Berwick, former acting director of the Centers for Medicare and Medicaid, confirm their estimate: 30 percent of the money we lay out for medical products and services does nothing to improve patients’ outcomes [3]. I find this quite alarming!

Some interesting findings showed that the ordering of more tests and surgeries did not have any positive effect on patient outcomes. Everyone is aware that medical spending is rising, with an ageing populating, it is expected that by 2050, one-fourth of the population will be aged 60+ in all major areas of the world except Africa [4]. In all countries, both health and long term care will drive up public spending.

When you start reading up on the shift in healthcare delivery taking shape, it seems to put the consumer at the center. As the world changes rapidly, it will be looking towards disruptive, innovative technologies to support more cost effective healthcare delivery options. At the same time empowering the patient for active engagement to handle the prospects of longer term care over population lifespans, which includes social networks, lower cost digital, mobile and tele-health expansions.

As we become more informed, more included in our healthcare delivery process, do we stand at the door of a revolution? We will know more about our own health track record, we will understand more about our medications, what they do for us, why we use them and what others have said about using them, we will have more access to clinical networks that we like engaging with, so that we can care for ourselves better, even if purely remote. We will hopefully make smarter choices, which are more informed and better managed. I foresee that this will truly overturn the current health system globally.

It all sounds terribly positive, indeed it sounds like we are on the verge of a breakthrough, were it not for the huge barriers to actually obtain and share my record between different providers.

There are many problems in giving patients access to their records, and disruptions occur due to patients experiencing delays in getting hold of or transferring medical record between providers, or possible even incurring cost. Despite the adoption of expensive EHR, EMR systems, that should allow the access to my digital record, it almost never happens and interoperability is still just a term being used very flippantly in PR talk. Even in 2018, it could take months for patients to get real usable data from one provider to the next, even in the same demographic area, possibly even using the same medical record system. Plus patients do not receive the necessary verification or information to assist them in understanding the information received. This makes getting a second opinion really difficult, or trying to research conditions or alternative treatments, thus making it difficult to engage and take ownership of our healthcare decisions. Also, care providers only release some or parts of the information. Some patients are even pushing to receive their labs information at the same time as the provider and do not want to receive filtered information.

As costs of healthcare rise (including huge increases in my medical insurance) I, the consumer, who am so used to controlling other areas of my life and my personal information and the choices of services I engage with, need more control over my health record. It is predicted that this growing consumer group is likely to become the majority and thus put pressure on the health ecosystems to really start pushing for the change it so desperately needs. Just a few months ago, I was taking part in a workshop where this issue was raised, and I was amazed at how many participants felt very strongly about continued filtering of information to patients.

A case study published by the New York Times [5], reveals quite the contrary. It follows the story of a businessman in his 50’s that requested a copy of his medical records to bring to a specialist for a second opinion, which he assumed would be straight forward. It took multiple trips to his Dr’s office, the hospital, signing of permission forms, paying for copies that took days, then finding out it was incomplete, more payments, more trips to the providers. The whole situation became terribly negative and he felt that the hospital and providers were trying to make it very hard for him. The rest of the article points to more research studies that concluded positive outcomes for providers and patients that actively engaged with their records and care plans, whilst disproving any of the dreaded pre-conceived ideas of negatively impacting patients to have full transparency of their record.

Taking into account how many providers are still hesitant to open up to us (the patients), it seems some wheels do turn very slowly. I will most definitely be supporting the change we so desperately need, asking our GPs and Providers for access and challenging them to provide it. With access to more information I will be able to understand and manage my own health and that of my family better. Will you?

1/3-It’s Not Just Profit Wrecking American Healthcare, By Maggie Mahar, MAY 15, 2017 

2-Reflections on Variations, Dartmouth Atlas of Healthcare, © 2018 The Trustees of Dartmouth College 

4-United Nations, Department of Economic and Social Affairs, Population Division (2015).
World Population Prospects: The 2015 Revision, Key Findings and Advance Tables. Working Paper No. ESA/P/WP.241.

5- Letting Patients Read the Doctor’s Notes, BY PAULINE W. CHEN, M.D. OCTOBER 4, 2012

Alet Mans
Product Manager
Email: 
alet.mans@infocarehealth.com