Download Summary of Patient Diary Project to Date

Summary of Patient Diary Project to Date
May 2011
This is a brief summary of the stages in the patient diary project to March 2011. The
project was initiated late 2009 with a call for interested parties to join a teleconference
in March 2010. This was highly successful with around 25 people indicating an interest.
This group included consumers, Cancer Society NZ staff, clinical nurse specialists, the four
regional cancer network managers and other patient advocacy groups as well as other
allied health professionals from around the country.
The initial meeting agreed that there appeared to be a need for a tool such as the patient
diary though it was noted that the suggested model was closer to a patient held record.
However the consumers present suggested that the term diary would be more readily
accepted by patients so the name ‘patient diary’ was retained. It was also agreed that a
thorough search of all current examples of such a model should be undertaken. This was
done with as many formats as possible reviewed. These ranged from a couple of pages to
several large folders. The local NZ examples were also noted. These were either cancer
specific or highly geographically localised.
After further discussion it was agreed that a standard, generic, nationally available
patient diary would help to meet some of the needs identified in the Cancer Control
document The Voice of Experience (2009). Shared decision making, information and
communication were all identified as being significant issues. A diary will also aid with the
implementation of the Guidance for Improving Supportive Care for Adults with Cancer in
New Zealand (2010).
It was decided that the easiest way to gauge effective integration into current care plans
was to establish a pilot site. This site has yet to be established. A key element to the
success of this programme will be active engagement by health care providers across the
spectrum. A significant part of the pilot will be to establish the most effective way to
engage health care providers with the diary.
Draft concepts were drawn up with the help of a design company. It was decided to have
the concepts reviewed by some cancer patients. Two focus groups were run late 2010, one
in Wellington and a second one in Auckland. These two groups were very helpful in
clarifying the key elements of a patient diary and also confirmed the potential usefulness
to different patients. It was also noted that there will be some patients who will chose to
not use a diary.
Further work has been undertaken to refine the design. A prototype will be available in
the next couple of months with the hope that a pilot will be ready to start early in the
second half of the year (probably September 2011).
Funding to date has been provided through CSNZ and after some internal discussions it has
been decided that this will continue to the pilot stage. However sustainable funding is still
to be finalised.
This is an exciting project that has many people enthused from patients to oncologists.
With such widespread support it is hoped this kit will greatly improve communication
across the health care team and, most importantly, support patients to receive the help,
information and support they need.
The key elements of the diary include the following:
•
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 any potential financial impact of their care)
•
monitoring of side effects/symptoms
•
record of medications used- both prescribed and over the counter or alternative
medications
The primary aims of the diary are:
 act as a prompt for questions
 act as a repository for all information
 enhance communication with all the members of the health care team
 cross the continuum of care from tertiary into primary services
 can improve clinic appointments by encouraging patients to be focused
 reduce anxiety by lessening feelings of helplessness
 ensure information needs of each patient met
 provides prompts for accessing extra support when needed
Keys to success:
 identified as useful by health care team
 use is supported by key members of HC team
 flexibility of the diary to accommodate both providers’ and users’ differences
 not for everyone!
For further information on this project please contact Sarah Penno at Cancer Society NZ