Download 2 - Central Cancer Network

The Cancer Patient Diary Project
“During Patient Safety Awareness Week, we’re all reminded that building strong communication
channels between patients, families, and health care providers can help lead to higher quality care.
We encourage patients and their families to participate in their health care and we remind health
care leaders to create and sustain a culture of patient safety.”
William B. Munier, M.D., Director of AHRQ’s Center for Quality Improvement and
Patient Safety
DESCRIPTION:
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Evidence from overseas has shown that increasing patient involvement in shared decision
making and facilitating greater active involvement in patients self-managing their own
health care improves patient outcomes1. It is also a legal requirement in New Zealand that
all health care providers ensure patients have access to information to the level they
require and in a format they can understand, to fulfil the patient’s right to effective
communication, their right to be fully informed and the right for patient’s to make
informed choices and give informed consent2.
A patient diary can be used as a tool to encourage and empower patients to more actively
engage in their health care. The diary would act as a repository for:
 all specific cancer information
 local treatment information
 laboratory/scan and test results
 Notes from clinicians/health care team (including treatment decisions/care plan)
 Specific questions/answers (including the potential cost of their care)
 Self reflection
 Monitoring of side effects/symptoms
 Record of medications used- both prescribed and over the counter or alternative
medications
 Other health issues/concerns
 Any other information that the individual patient requires
A secondary but potentially equally important function of the diary is to enhance
communication between health care team members3. Access to consistent information
1
Elwyn G , Edwards A (2009) Shared Decision-Making in Health Care: achieving Evidenced-Based
Patient Choice 2nd Ed; Oxford University Press
2
Health & Disability Commissioner; Code of Health and Disability Services Consumer’s Rights (accessed
Nov 2009: http://www.hdc.org.nz/files/hdc/code-leaflet.pdf )
3
Sharp L, Laurell G, Tiblom Y, Anderson A, (2004) Care Diaries: A way of Increasing Head and Neck Cancer
Patient’s Involvement in Their Own Care and the Communication Between Clinicians; Cancer Nursing; vol.
27:2
4
Hill S, Sarfati D, Blakely T, et al (2010) Survival disparities in Indigenous and non-indigenous New Zealanders
with colon cancer: the role of patient co-morbidity, treatment and health service factors; J Epidemiological
Community Health; Vol. 64
5
Pitkethly M, MacGillivray S & Ryan R (2008) Recordings or Summaries of Consultations for People With
Cancer (Review) Cochrane Database of Systemic Reviews; Issue 3 Art. No. CD001539
strengthens communication. Reducing the need for patients to repeat their history and
ensuring specific treatment information is conveyed particularly into the primary care
sector, enhances patient outcomes.
The patient diary could also help to decrease inequalities by prompting more complete
access to care, increasing communication opportunities particularly regarding
management of co-morbidities, and potentially reduce wait times for Maori patients 4
It should be noted that not every patient will want to use a patient diary. Studies have
shown that patient participation in decision making and the use of clinical summaries is
highly patient specific5.
In NZ there are a few examples of patient diaries in use either in specific services or for
specific cancers. This project seeks to develop a generic patient diary which can be used
by all patients with cancer across a variety of settings.
Cancer Society NZ, members of the CANGO group and the regional cancer networks are
seeking to collaborate on this initiative.