Monday, July 28, 2008

Acronyms N - Z

NCDS National Chronic Disease Strategy
NRA National Reform Agenda
PBS Pharmaceutical Benefits Scheme
TAMS Territory and Municipal Services (ACT Government)

Acronyms A - M

ABHI Australian Better Health Initiative
ACTDGP ACT Division of General Practice
ACTPLA ACT Planning and Land Authority (ACT Government)
AIHW Australian Institute of Health and Welfare
CMD Chief Minister’s Department (ACT Government)
COAG Council of Australian Governments
COPD Chronic Obstructive Pulmonary Disease
DALYs Disability Adjusted Life Years
DET Department of Education and Training (ACT Government)
DHCS Disability, Housing and Community Services (ACT Government)
GP General Practitioner
LDA Land Development Agency (ACT Government)
MBS Medicare Benefits Scheme

Thursday, July 24, 2008

SCIPPS - conference presentation

Dr Jun-Hee Jeon from the Australian Primary Health Care Research Institute, Australian National University sent me the link to the slides from her recent conference presentation based on the interim findings from SCIPPS.

The Experience of Chronic Illness: Balancing Life and Illness

pdf (144 kb) of slides from her presentation

Tuesday, July 22, 2008


Serious and Continuing Illness Policy and Practice Study (SCIPPS)

Yesterday HCCA held a forum for a report on the interim findings of SCIPPS. What follows is my summary of the session. I didn't capture all the details but hope this gives you a feeling for the presentation and discussion that followed. The team presented at a conference in June

Professor Nick Glasgow gave an overview of SCIPPS to the participants. He said:
SCIPPS is an NHMRC funded program designed to identify and understand impediments that consumers with chronic conditions have in accessing best practice care, with a view to discern perfect policy solutions to these system impediments to access.

The chronic conditions that have been considered in this study are diabetes, chronic heart failure (CHF) and chronic obstructive pulmonary disease (COPD).

The SCIPPS Research team came to HCCA in November 2006 to outline the research project and returned to present interim findings.

Research Fellow, Dr Yun-Hee Jeon presented the findings of the study to date.

Who was involved in the study?
The research team conducted in depth interviews with study participants.
  • 66 participants (52 patients and 14 carers) from ACT and Sydney West Area Health Service
  • participants were aged between 45 – 85, living in ACT or WSAHS with the COPD, CHF and Diabetes and most were older than 65
  • The participants were referred by acute care wards, community health services and GPs
  • significant number from CALD backgrounds
  • most identified as experiencing significant financial disadvantage as a result of their chronic condition
  • most have more than one chronic condition
  • 86% had co-morbidity
  • most visited their GP more than once a month

Participants spoke of the difficulty in balancing life and illness. They reported constant juggling of competing priorities of work, family, illness. The limitations to aspects of daily life as a result of their health included: time, physical, financial, and psycho-social. Isolation was mentioned by the majority of participants as an issue.

Key issues
1. Financial hardship
2. Health literacy
3. Health care encounters – experience and perception of standards of care practice
4. Co morbidity conditions

1. Financial hardship
  • Affordability of treatment : Medication, oxygen, texts and check ups equipment and support devices medical appointments, Accessing allied health care services and other services
  • Affordability of other things: Basic cost of living, Healthy food, exercise, travel, house repair, entertainment
  • Pension concession related issues: Eligibility of pension, health care card and concession card
  • Health funds and insurance: Access to private health care

2. Health Literacy
  • Difference between health care consumers level of knowledge and clinicians perception of their knowledge
  • Experiential learning, learning as it takes place, by trial and error but there must be a safer way to share consumer knowledge and to learn form each other

3. Health care encounters
  • Difficulty they have with health workers
  • Difficult in accessing services
  • Manner in which some professionals
  • Transport was a major problem
  • Waiting for services

Service and system issues identified by consumers and carers:
  • access lack of timely services and
  • workforce shortage
  • fragmentation of services
  • lack of continuity of care
  • health professional behaviour

Patient related issues identified by health professionals included:
Lack of compliance
poor health literacy

Discussion with HCCA members

Patient Centred Care was discussed. Reference was made to the International Alliance of Patients' Organisations (IAPO) Declaration of patient centred health care.

One participant in yesterday's discussion said:
To make patient centred health care we need to take away the authority of the doctor. It is my disease and it is happening to me.
There was considerable discussion on management plans
ED presentations often mean the management plan has failed.
Who never has to go to ED because their care is well managed: luck, disease progressions lifestyle factors.
  • There was agreement that a management plan is an essential tool
Writing these plans is a time to have questions answered, conversations about concerns, write useful things down, prepare advance care plans. This is important to give people a sense of control, ownership and security.
One consumer shared his own experience. He spoke of his Management Plan and Emergency Response Plan. These plans have kept him out of hospital four times in the last 12 months
There is a question of who writes the care plans? How can we reward consumers and staff for contributing to the plan? Financial reward for employees?

Other issues raised were:
  • Disturbed employment pattern exacerbated some of the financial issues. Accessing health care when yo are maintaining a job “being sick is a full time business”
  • What about identifying consumers with disabilities and see how this impacts in patient experience
  • If economic limitations are excluded ( people who can afford access to allied health services) and have higher level of health literacy, do they have a high health status.
  • Respite needs to be appropriate for the carer and the person
  • Earlier intervention, not end stage of chronic disease but vast majority of chronic conditions would benefit from earlier intervention people who are still trying to manage family responsibilities, work commitments etc
  • Need for consumer participation
  • raising people’s confidence to take a lead in their own care
I will post the results of the findings once Dr Jeon has sent them on.

I received an email this morning from Laurann Yen, the Research Manager of SCIPPS. Laurann writes:
Thanks so much for organising for us to speak with the group of interested consumers and consumer organisations- it was really helpful to be able to run our findings past the experts, and there were a number of things we picked up which will both suggest a re-think of our interpretation, such as thinking about balancing not as between two competing priorities, but between a range of different issues and alternatives which present themselves and need dealing with; and of course the suggestions for how the system might act differently for a better outcome. I hope we can come back to HCCA again after we have started to try out some interventions and get the thoughts of the group.
Thank you to everyone who participated on the day.

Wednesday, July 16, 2008

Tribute to Phillip Gleeson

It is with sadness that I write this post on the death of Phillip Gleeson, one of our most experienced and respected consumer representatives.

Philip was a longstanding member of the Health Care Consumers’ Association of the ACT. He was an amazing person with a wonderful sense of humour and strong respect for others. He made a valuable contribution to facilities for people with MS in the ACT as well as to the advancement of health care services to consumers more generally.

Russell McGowan commented that

Phillip contributed significantly to the health system’s understanding of the value of consumer perspective in dealing with intractable problems.

Phillip was a gifted narrator and creative writer, and at a time when there is consideration of a national compact between government and the community sector, it is worth noting his contribution to the shaping of the Social Compact in the ACT.

We have been fortunate to have had Philip as our friend and colleague, and our thoughts are with Prue, Hannah and his extended family as they struggle to cope with this tragic loss.

Prue worked with us for many years and is held in very high regard by members and staff of HCCA . I have been contacted by many members expressing their sadness at Phillip's death and sharing their support for Prue at this time.

Phillip is a great loss to the consumer movement and to our community.

Tuesday, July 15, 2008

Medication errors and electronic prescribing

Medication errors have been identified as a major type of medical errors and are an important factor that influences the quality of care we receive.

This article looks at the wider use of electronic prescribing to reduce the risk of medication errors. This is of significant interest to consumers espeically at this time of development of e-health.

The authors performed a systematic and quantitative review to determine the effect of electronic prescribing on the risk of medication errors and adverse drug events

Our results indicate that electronic prescribing seems to be a useful intervention for reducing the risk of medication errors and ADEs. We found that there is especially good evidence for a positive effect of electronic prescribing offering advanced decision support functionality in hospital settings.

Another of their conclusions of particular interest is that:
insufficient implementation planning, or systems that are not integrated into the general information systems, may lead to negative effects on the process and even the outcome of care

You can read the full article - The Effect of Electronic Prescribing on Medication Errors and Adverse Drug Events: A Systematic Review
(As an aside, the article gets quite technical at times and the tables of data are a little imposing.)

Wednesday, July 2, 2008

Report on Health Issue Group - June 2008

The Health Issues Group was held on Thursday 26 June. It was well attended and participants have provided us with useful comments to progress. The main topic for discussion was electronic health records.

Tony Greville, HCCA policy officer, reported on a workshop he attended with Consumers Health Forum of Australia (CHF).

The main issues participants raised regarding the electronic health record were:
  • content - What is included and how is it defined? What form will it take?
  • access - Who can read it? Who can add to it? What about people who do not have computer access?
  • ownership/security -Who owns the software and the content?

What does it include? There was preference for this to be a medication record including over the counter and complementary results of diagnostic tests, medical imaging, pathology results as well as discharge summaries.

There was agreement that electronic discharge summaries must contain information that is understandable, accurate and precise. It needs to include medication details, follow up appointments for consultations and tests and arrangements for community nurse visits as well as in home care and support.

Access issues

Many aspects of access were discussed. There was considerable variation in the degree of access individual consumers preferred. This emerged from discussion on information needs individual consumers identified. This ranged from viewing all entries in the record, to seeing a limited range such as summaries of test results, clinical notes and observations and medical record.

All participants agreed that consumers must be supported to interpret and understand the contents of the record.

The issue of health literacy is an important one. Participants shared experiences as they learned more about illnesses and conditions their health literacy improved. There was agreement that an electronic health record needs to have the capability in the system to increase the level of access to information as our health literacy improves.

There was discussion of the benefits of a health record termed a save my life health record. This would include summary of information critical to the consumer’s health including diseases (such as diabetes), blood type, allergies, and current medication.


Ownership and security of the information was perceived by participants as a major barrier to progressing electronic health records. Participant’s expressed concern about the security of information if it is held by companies who are driven by the market particularly that personal health information maybe sold to insurance companies. Participants expressed confidence that a government controlled system would overcome this.

There was support among participants for a pilot to operate in the ACT Health. The ACT community has the highest rate of broadband access. This could be an opt in system. HCCA will do some more work on this.