Big results come from taking small steps
At the time I was working in Finland in the late 90s, Nokia was in the process of releasing a new type of mobile phone that could connect to the Internet. The Internet was already a must have tool for connecting you to the people, places and information you needed through your computer, and the thought of having the possibility to connect whenever from wherever you were using the device in your pocket was pretty exciting.
A short time later I returned to London and told my friends about this amazing new thing called WAP, which I believed was going to revolutionise the way we lived. However most of them really didn’t care, it didn’t mean much in their lives at that point in time, the phones were out of their price range and they didn’t see the value. They were more interested in the slide functionality of the prototype Nokia 7110 I had brought back with me — which made a cool noise as it flipped back and forth — than the possibilities an Internet connected mobile phone could bring. Although a decade later they are all now happy iPhone and Android owners who wouldn’t leave home without their precious smart phones.
Soon after I returned to the United Kingdom I started seeing major print, outdoor and TV advertising run by BT Cellnet — the major carrier in the UK at the time — asking you to come and surf the BT Cellnet. The advertising campaign featured a slick silver avatar surfing down through a multicoloured tube of light, giving you the impression you could get all this information at your fingertips at lightening speed. The reality at 9kb/s was more like teletext than television.
I worry that a similar path is unfolding for the rollout of eHealth tools such as the Personally Controlled Electronic Health Record (PCEHR) here in Australia. I do believe the PCEHR is a very important first step on the journey to a more sustainable patient centred model of care, but one of many. Perhaps given the very short time frames to its launch on 1 July 2012 and the massive development work needed to just simply get the clinical system in building A to talk to the clinical system in building B, maybe we should just start small?
As a patient with a chronic disease, I am motivated to avoid pain, costly time off work, and further procedures. I have, over the years, learnt to understand my body but also seek out more information from both the medical and patient world to help me help myself.
Initially I thought the PCEHR would be a tool for me, the patient, to help me manage my health through an online portal of applications and services designed to support me in making decisions about my health needs. It would be a way to migrate us from a provider centric model of care to the patient centric system where consumers are empowered to take more responsibility for their own health and play a more active role in their healthcare dialogue.
The Business Council of Australia has a brilliant document which talks about the need to reform healthcare delivery to ensure a sustainable future for all. Using Microeconomic reform to deliver patient centred care highlights the need to migrate more of the care away from the ‘mainframe’ model where people come in to a healthcare facility to seek help, towards a system where tools and support for people is provided closer to, if not in, their own homes. Cost effective systems are needed to support a more prevention-led environment for managing health rather than today’s reactive model focused on the delivery of medical care.
We are not the only ones to be focusing on this migration. The Health 2.0 summit taking place in San Francisco in late September will bring together key stakeholders from health, industry and patient advocacy groups to discuss the opportunities modern technologies present. I believe this event will provide significant insights into the barriers to change and ideas about how to drive the adoption of eHealth in Australia.
For my own healthcare needs I have created a medical folder with sections for all my test results and medical information, as well as notes and questions from articles or conversations conducted online with other patients. I take this with me to all of my various appointments so that I know my care team are all on the same page with current medications, tests, allergies, previous history and I don’t waste our time repeating all this information. Another key advantage is as a memory aid, my blue folder ensures in those moments when I am in pain or just having a stressful day I don’t need to try and remember the exact details of a surgery performed over 10 years ago. I can’t imagine what it must be like for someone twice my age or suffering from cognitive issues.
The PCEHR is not the patient portal I thought it was initially — it is even more important. It is the secure space where my care team — regardless of where they are or what system they use — can access the right information when they need it, and in turn provide me with the best care.
It will be initially a blank folder sitting in the cloud. The clinicians I choose to care for me will be able to access this service to retrieve the most important health information about me.
I want the PCEHR to be a digital version of my little blue folder. I want to feel safe that the most important information about my health is available to those I choose to care for me. The patient apps and services are important and we need to ensure the PCEHR is designed for their integration, but they can come later.
Let us start by focusing on where this is needed most: primary care. GPs will be on the frontline of rolling this out and this is where the health conversations already happen, so let us work on making it right for them to begin with, while still ensuring that we meet the patient privacy and security concerns.
When you build a house you put the foundations in first, the PCEHR is no different. I am really pleased NEHTA has and continues to bring together all 4 corners — Consumers, Clinicians, ICT and Policy to talk about the design and roadmap, but for 1 July 2012 — let us keep it simple and ensure we don’t over promise and under deliver.
Rachel de Sain
Rachel consultants on digital strategy, is part of the clinical leads & consumer reference forum at NEHTA, she is a board member for HISA (Health Informatics Society of Australia) and previously held positions on the board at AIMIA Victoria and Vic ICT for Women.
Posted in Australian eHealth