Personal stories in the journey to personalised medicine

Most who attended would agree that the highlight of last year’s Health Informatics Conference (HIC) was Regina Holliday, the US artist who gave a keynote speech on her personal story of her family’s interaction with the healthcare system, and how it led to her becoming an advocate for patients and for health IT. This year, two IT specialists will recount their experiences with a cancer diagnosis and how they using IT on their own patient journeys.

Patient perspectives about their interaction with the healthcare system are abundant these days due to the numerous blogs and online support groups available, but of increasing interest is patient perspectives about their interaction with their healthcare information.

One reason why Ms Holliday's presentation at HIC 2012 resonated so strongly was the emphasis it placed on patient access to their information and how empowering it can be. At this year's HIC, being held in Adelaide in July, the personal experiences of IT specialists themselves will be told.

Jon Hilton, well-known in the local health IT community as HISA's vice president and in his day job as programs manager at Precedence Health Care, will bring a very personal view to how Precedence's cdmNet chronic disease management system is being used.

cdmNet is a GP-led software system designed to facilitate the team care arrangements required for patients with chronic illnesses, and which also allows patients to participate fully in the management of their own care. It was recently validated in a Victorian trial for type 2 diabetes, and is providing the care coordination and information technology support for the Department of Health and Ageing Diabetes Care Project.

It is designed to work for any chronic disease, and is being offered to general practices, primary care networks and Medicare Locals to improve team care for chronic disease.

While it has been used to create care plans for women with breast cancer, there has not been a cancer-specific plan developed before. Mr Hilton, however, is changing all of that by developing a care plan in association with his medical and allied health team as he goes through treatment for cancer himself.

In January this year, Mr Hilton had exploratory surgery that found a growth between his bile duct and gall bladder. The growth was cancerous, but an operation to remove it and the affected organs was unsuccessful, so he is now on a six-month course of chemotherapy.

He has created a diary of the treatment on his personal blog, but has also been successful in getting his GP, oncologist, and surgeon to use cdmNet and add clinical notes to his own care plan.

“I'm off to see a exercise physiologist so I'm hoping to get them into the picture, and I've been talking to my pharmacist,” Mr Hilton says. “It's just a matter of getting the time to sit down with them and go through it. Everybody's keen and it's working well.”

On his blog, he writes that cdmNet is working very well – “the oncologist has put in a note, which impressed the practice nurse and GP no end”.

“So far I have a good collection of input from myself (of course) the GP, practice nurse, surgeon, oncologist and dentist. I have a good relationship with the pharmacist, so they will be next.”

He also writes about how the experience is also showing that Precedence and Medicare Locals will need to ensure that all clinicians who come to use the system, particularly allied health professionals, will need to be fully engaged to get the most out of it.

While not many people have used cdmNet for cancer before, cdmNet is flexible enough to allow GPs to create their own plans, which is what Mr Hilton has done for his own situation.

“What I did was sit down and look at my case, and tried to keep it general,” he said. “Given that I was in a unique position here, I have enough knowledge about cdmNet to understand how to make a plan so that it could be generalised.

“So that's what I did – I took the opportunity to build a plan that I thought could be generalised, ran that by the oncologist, who understood it and agreed that it was reasonable. I'm now in the process of engaging with the RACGP to put a working group together to assist with the clinical governance of these plans.”

This is what Mr Hilton will be discussing in his presentation at HIC as part of the oncology patient journey stream being held on Wednesday, July 17. “There are roughly three parts to my story: in hospital, being discharged from hospital and a bit of bouncing backwards and forwards, and living in primary care managing my condition,” he says.

“I'll be telling a story that goes through those three elements with a major focus on the primary care stuff. I'll be using screenshots from my care plan – I have no privacy concerns here and I don't care who knows what about me.”

What he also wants to get across to the audience is his view that the real wins in health IT are to be gained from cleaning up administrative processes to make it easier to administer healthcare.

“While telemedicine and video and wonderful high-tech stuff are necessary and important and useful, we still need to pay attention to some of the more mundane but fundamental issues around how we administer healthcare and how we make it more effective,” he says. “That's what cdmNet is squarely aimed at.”

Another personal story will be told by Salvatore Iaconesi, an interaction designer, engineer and artist from Rome who will talk via video about his experience with a cancer diagnosis and how he had to hack his own medical records to get access to his own information.

Mr Iaconesi was diagnosed with a brain tumour last year. He asked to get a digital copy of his medical records so he could show them to other doctors, but as some were written using Windows software – he is a Linux and OSX user – and his MRI scans were stored as DICOM files, he was unable to open the records or share them with anyone else.

“Sadly they were in a closed, proprietary format and, thus, I could not open them using my computer, or send them in this format to all the people who could have saved my life,” he writes.

So he cracked them. Mr Iaconesi has since designed an open source reader for DICOM images that is free to download and use, and he has also published all of the information on his website.

“I opened them and converted the contents into open formats, so that I could share them with everyone. Just today I have been able to share the data about my health condition (about my brain cancer) with 3 doctors. 2 of them already replied.

“I have been able to do it because the data used open, accessible formats: they have been able to open the files using their computers, their tablets. They have been able to reply from home, on Sunday.”

As he said in a TED talk earlier this year, the response to his project was incredible. “More than 200,000 people have visited the site and many have provided videos, poems, medical opinions, suggestions of alternative cures or lifestyles, personal stories of success or, sadly, failures – and simply the statement, "I am here." Among them were more than 90 doctors and researchers who offered information and support.

“The geneticist and TED fellow Jimmy Lin has offered to sequence the genome of my tumor after surgery – in an open-source platform, of course. And the Italian parliament has been debating a motion to make all patients' medical records more open and accessible, which would be amazing progress in my country.”

Mr Iaconesi has since had surgery and the tumour was removed, but he has not forgotten what it felt like to be diagnosed in the first place. “Being "diseased" is like a state of suspended life,” he said.

“When you are declared "diseased," you become a set of medical records, therapy, dosages, exam dates. It's as if you disappear, replaced by your disease.

“I see a cure as a dynamic process, in which multiple doctors, professionals, artists, scientists and others join as a society – to converse, support each other, be open to various contributions and shape solutions that merge humanity, technology, technique, philosophy and art.

“Creativity and "normal life" become part of the process and bring "diseased" people back to life. To me, a true cure is complete, is human, and has dignity. And it never ends.”

Posted in Australian eHealth

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