Yes, we need more information


"Inviting patients to read and review their health information, especially the notes written after a medical visit, is an important way to improve communication between patients and health professionals ..."

I’ve been thinking about information. How much information about their cancer should a patient receive and how should it be delivered? I’ve read the Open Notes website! ( This covers a movement in medicine where clinicians share their notes with the patients while they are writing them or shortly thereafter.

But there are other areas where information is needed too. How about educating patients about the nature of their cancer? Ignorance isn’t bliss; denial doesn’t work for long. I’ve learnt this from experience when my fertile imagination has filled in gaps in knowledge. Without knowledge, we are not going to take such good care of ourselves. Is keeping information from us acceptable in the 21st Century?  We've come a long way in the last century but we still have a way to travel down the transparency and patient education highway. 

What is Open Notes?

What follows is a series of quotations from their website.

OpenNotes is the international movement that’s making health care more transparent. It urges doctors, nurses, therapists, and others to invite patients to read the notes they write to describe a visit. We call these open notes  ...


Designed for health professionals learning about open notes, the Implementation Toolkit provides materials to help you gain support in your health system, think through policy decisions and communication materials to prepare for launch, and get the most out of note sharing once you’re up and running materials to help you gain support in your health system, think through policy decisions and c

Making the Case for Open Notes

Inviting patients to read and review their health information, especially the notes written after a medical visit, is an important way to improve communication between patients and health professionals, to enhance engagement, and to help patients become more active in their own care. Moreover, research continues to show that engaged patients have better health outcomes ...

Patients Want Open Notes and Report Benefits from Reading Their Notes

The original OpenNotes study involving patients at Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in rural Pennsylvania, and Harborview Medical Center in Seattle found that 80% of patients offered open notes read at least one note over the year-long study period, and 99% wanted the practice to continue, whether or not they chose to read their notes. Subsequent survey data from Kaiser Permanente (NW) and the Department of Veteran’s Affairs (VA), the first system to adopt open notes across all disciplines, have shown similar results ...

Study Highlights:

77-87% of patients said open notes helped them feel more in control of their care.
60-78% of those taking medications reported better adherence.
85% of patients said they would choose a health professional based on the availability of open notes.

Get Access
Your notes are about you. Being able to read them is not a privilege. It’s a federally protected right. (I think this applies in NZ too.) Today, more than 21 million people can read their notes when and where they want. We’re working hard for the day when all patients can do the same ...

Here is a great video from the website. 

Quotes from the video: 

"It didn't turn out to be the time suck people thought it would be." (GP)

"He accepts me as owner and prime driver of this little collection of cells." (Patient)


What about educating patients so that they understand their disease and can cope with it better?  At present, patients might be given a book about Head and Neck Cancer from the Australian Cancer Society. They might get a booklet about the multidisciplinary meeting and a sheet about a procedure they will undergo, as in my case, a marginal mandibulectomy. These days they might be referred to this website and Beyond Five’s excellent 3D animations.

All the above is good but we can do better to encourage people to take more interest in the technicalities of their cancer. I wonder if a double sided sheet with internet links might be helpful for patients and carers with a thirst for knowledge and education. Imagine if we put our own local information in a document like this that treats the patient or carer like an intelligent person.

No handout is going to work properly unless someone, maybe a nurse, could sit with the patient for ten minutes, go through the material and point out how it might be useful.

Finally, when i was researching this story, I found the article below which is about patient/clinician communication and information during ward rounds. Well worth a read.

E-mail me when people leave their comments –

Diana Ayling

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  • There needs to be at least a two way information exchange here.  Too many medical professionals keep all the information in their notes on your medical files.  We all need to be able to access our own medical files.  Ask questions about what's in there.  Have what's in there expained in a clear, honest and concise manner.  I heave heard the arguement that the highly paid surgeon does not have time for this "too demeaning" is what I have heard.  If this is so, then there should be someone who can "interpret" on their behalf.  Ah, I hear you say, that's what the Cancer Nurse Coordinato (CNC) is for.  Really.  Then why have we NEVER met the CNC (Andrea Dempsey-Thornton) at Wanganui hospital ?  Why did she NEVER contact us until after Keith's radiation therapy ?  Why did she wait until she was prompted to act by the Social Services team at Hutt hospital ?  A bit late then as (according to Dr Simon Lou, Hamilton), who was one of the instigaters of the CNC service, the primary function of the CNC is to guide the patient through the system from start to finish.  Our CNC knew Keith had cancer, the dental technician she communicated with (Barbra Dewson) by email (we were given copies) knew Keith had cancer.  Why did these "health professionals" not mention this to Keith, as the patient he had the right to be informed.  Wanganui hospital staff NEVER informed Keith that he had cancer.  This is unacceptable.  How many other patients have not been told the truth about their situation ?  When Dr Lou was told that Peter Napier Liston (the surgeon responsible for the non disclosure and subsequent prosecution by the HDC) had not been at the Head and Neck Multidiciplinay Team meeting on the 3rd december 2013 Dr Lou was appauled.  We eventually were told by Professor Swee Tan, who, as our salvation, literally saved Keith's life.

    We cannot get to the crux of the real communication problem in this case as, after reading the above, I find there to be only one conclusion.  It is recorded fact that Liston, Dewson and  Dempsey-Thornton all knew that Keith had cancer.  So why was this information kept from him ?  Only one reason.  They were "observing" the progres of the tumour.

    The case of Keith Hindson (the patient), and the withholding of a cancer diagnosis and mismanagement of a cancerous tongue lesion by an oral maxillofacial surgeon (OMS), Peter Napier Liston, at Wanganui hospital.



    HDC code for above case : 14DC00828

    Full decision PDF 581kb

    Case note DDF 261 kb

    Search decisions - Health and Disability Commissioner
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