Taking control of her own treatment

Published

Eli Arild has had a rocky year and a lot of contact with the hospital. She is very happy that, at around the same time that she became seriously ill, she was given electronic access to her patient record.

The plan is for everyone in the north of Norway to have access to their own patient records from 10 December 2015. Eli Arild is one of the people who has tested the service for a year now.

Patient Eli Arild
Eli Arild (63) has had a rocky year with illness. She is very happy with the overview she gets of the course of her illness through electronic access to her own patient records.

 

'I have to say that I use it a lot. Having access to your record is particularly useful for people with chronic illnesses, as it helps you to understand and get to know your own illness. The illness has meant that I have seen a lot of different specialists, and having access to my own record has helped me to maintain an overview of all the examinations I've undergone and the results. In the midst of all this, I would say that I've been lucky to have been a test patient over the past year,' Eli Arild says and smiles.

In her opinion, there is a great difference between reading what is written in your record and being given a discharge summary.

A discharge summary is just that - a summary. In the patient record, I find the details I'm looking for.

She remembers being slightly anxious the first time she logged on. 

I'd just come out of hospital and wasn't sure what information I would find. It turned out that there was nothing new there, but I gained an overview of things I'd forgotten, which I appreciated.

Now, she is waiting impatiently for the next step. 'I want to see all my test results, I want to see my regular GP record and private specialists' records, I want to be able to reschedule appointments online, I want to see the appointments I've had and the planned appointments ahead. I want to be able to communicate with the person responsible for my treatment by email if there is anything I'm wondering about.

 

Patient Eli Arild holding her cell phone
Eli Arild says that she now mainly accesses her records on her mobile phone or tablet.

 

Lot of interest

The project 'Electronic access to patient records' (INNSYN) is part of the Northern Norway Regional Health Authority's digital patient services initiative. The regional health authority reports considerable expectations from patients.

'Many of the participants in the pilot study reported that they had expected to see more, i.e. regular GP records, dental health records etc. Not everyone is necessarily aware of the dividing lines in the health service,' says project manager Tove Sørensen at the Norwegian Centre for eHealth Research at the University Hospital of Northern Norway (UNN HF).

 

Obtained from DIPS

When patients log onto helsenorge.no's web portal, they can see all the documents in their records that can be shown in DIPS.

'The service shows an overview of all the documents stored in DIPS, and most of them can be opened and saved. It is unfortunately not possible to show documents that are stored in separate specialised systems, such as test results, X-ray images and birth/postnatal records, in this solution. They can be ordered from the hospital, in the same way that you can order older documents,' says Sørensen.

Access to records will be available from 10 October 2014 for the University Hospital of Northern Norway , and from 21 September 2015 for the other health trusts under the Northern Norway Regional Health Authority.

The patients who took part in the trials said that they didn't have any great difficulties understanding what they read. One of the objections to access to patient records has been that patients won't understand specialist medical expressions.

'In order to boost patients' understanding, helsenorge.no provides access to a medical dictionary in which it is easy to look up words you don't understand, but the vast majority of the participants in the trial said that they had understood what they had read. 'When the patients read the documents, it is in a context that contributes to increased understanding – after all, they know why they've been in contact with the hospital. Many health care workers registered to test the service, and the feedback showed that there was very little difference between those with and without medical backgrounds with respect to understanding what they read,' says Sørensen.

'I have googled or asked the doctor about words I didn't understand. As I have a rare diagnosis, I've read a lot about my illness. I also read quite a lot of research articles relating to my illness,' says Eli Arild.

 

Important to quality

An impressive 99% of the test patients have said that they will continue to use the service.

Seriously ill people and people with chronic illnesses will naturally need to use the service on an almost daily basis, but for most people, I believe this will be a service that people are happy to have but that they won't necessarily use that often, says Sørensen.

Giving patients access to their records also means that any errors in the records can be identified.

'We expect data quality problems to be identified. During the pilot, one patient noticed entries in his records that concerned someone else. This error probably arose when the person entering information in the records had several patient windows open at the same time, and entered the information in the wrong patient's record,' explains head of development Ragnhild Varmedal.

They assume that press coverage will ensue if many such errors are identified when everyone in the north of Norway is given access to their records.

'The alternative is a lot worse: that errors are not identified and patients risk receiving the wrong treatment,' says Varmedal.

In order to be able to deal expediently with enquiries from patients about their records, the Northern Norway Regional Health Authority will establish a secure online service for patients in the course of 2016. For now, patients will have to continue to send letters or call if they have questions about anything they find in their records.

Tove Sørensen hopes that INNSYN will be well received. Patient Eli Arild is in no doubt that it will.

 

 

Electronic access to patient records

The Northern Norway Regional Health Authority's project is divided into six phases:

Phase 0: Helsenorge prototype design (concluded 25 April 2015)

Phase 1: Pilot patient access for selected patients in production (25 November 2014–20 February 2015)

Phase 2: Expand services and upscale to approx. 500 patients (1 January–15 May 2015)

Phase 3: Further expand number of services (1 January 2015–1 December 2016)

Phase 4: Plan individual implementation projects for the trusts with regional support (1 August 2014–1 June 2015)

Phase 5: Implement individual implementation projects for the trusts for each service (1 September 2015–1 December 2016)

Phase 6: Completion phase (1 October 2016–1 February 2017)

The figures show that the project has cost around NOK 19 million to date.

 

 

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