Thursday, June 19, 2014
What do consumers value?
Well, over the years consumers have told us this:
• spend enough time during my consultation to listen, talk and explain things to me
• explain things to me in a way I can understand
• encourage me to ask questions and does their best to answer them
• give me enough information about my condition
• give me enough information about my treatment options
• include me in decisions about my treatment options
• explain the purpose of tests and treatment in a way that I understand
• explain the results of diagnostic tests in a way that I understand
• support me to self-manage my health
Wednesday, April 23, 2014
Health Pathways for the ACT
- The environment and creating fertile ground for collaboration and service improvement
- The detail of service improvement, running work groups and getting change
- The pathways: these are enablers of service change. They reduce variation in the system and improve outcomes
Thursday, March 22, 2012
Forum with health care consumers to discuss the ACT Chronic Disease Strategy
Friday, September 18, 2009
Consumer experiences of self managing chronic conditions
In August HCCA facilitated a workshop of around 50 consumers on behalf of the ACT Division of General Practice (ACTDGP). This workshop is part of Interprofessional Learning Project currently underway involving ANU and the ACTDGP.Consumers were asked specifically about what helps them to self management their chronic conditions and what barriers they encounter in their self management. Participants worked in table groups to share their experiences and document their ideas.

A number of speakers also gave presentations to participants.

Russell McGowan (Pictured) talked about the national level reform in chronic conditions and also talked about his involvement with the Consumers Health Forum project on developing resources to support people to self manage their chronic conditions
Judy Stone, told the participants about the Interprofessional Learning programs currently underway in ACT Health
Other speakers included Susan Abbott (ANU), Amanda Plowright (SHOUT), Ann Thomson (RSI and Overuse Injury Association) and Jo Stewart, a peer leader for the Living a Healthy Life with Chronic Conditions workshops.
Enablers
Knowledge of the system and their condition were identified as important enablers for consumers. Working with a doctor who is knowledgeable about the condition, treatment options and available supports was also important. Research, particularly using the internet, was mentioned as were self help courses as a way of gaining knowledge.
Some existing services were identified as significant enablers for managing chronic conditions: Job Access, psychology services, hydro pools and other services sere identified as desirable. Good medical services particularly GP services were also identified as enablers.
Participants identified the need for appropriate design for people with chronic conditions.
Participants repeatedly identified support from others, groups, families, friends, as important enablers for management of chronic conditions.

When communication channels are respectful, informed, inclusive and personable they were seen as enabling the management of chronic conditions. Effective communication between health providers facilitated by good record keeping was also identified.
Participants identified good treatment and plans to treat as important in enabling them to manage a chronic condition. This plan could include lifestyle factors. A multi pronged or holistic approach was mentioned.
Having plenty of money was identified as an enabler to self managing a chronic condition.
Participants identified that a positive attitude and determination are useful enablers.
Barriers
Participants were very vocal about the need for health professionals to interact with them as people first. They want respectful, honest, considered and comprehensive communication about their situation.
Lack of Medical Profession Knowledge about chronic conditions was seen as a barrier to the management of those conditions and the variation between doctors knowledge was raised by participants.
Participants recognized that they needed to be well informed about their chronic conditions, however they were struggling to gather reliable information which would help them to successfully manage their chronic conditions. They were also concerned about the level of general knowledge in the community about chronic conditions.
The shortage of doctors in Canberra both GP’s and specialists was seen as a barrier to managing chronic conditions. This was reflected in many comments about waiting times to see doctors.
Participants identified specific areas of service deficit as a barrier to managing chronic conditions. These included, interpreter services, hydro therapy, rehab gyms, well resourced support groups, advice advocacy services, and service closures.

Carers were recognized by participants as central to their ability to self manage their chronic conditions and when carers were not available self management was threatened.
Participants were acutely aware of the need to provide well designed, accessible public spaces and transport and that when this did not exist it was a barrier to managing chronic conditions.
Poor dental services were identified as a barrier to self management of chronic conditions.
Isolation from community was a concern for participants.
Participants repeatedly highlighted the added costs associated with managing a chronic condition: home help, medication, therapy, tests and medical visits. Loss on income was also mentioned. Several participant also mentioned their concerns around transparency in decision making around the cost of ordering tests and intervention.
Participants were frank about their concerns about their experiences where they perceived a power imbalance in their interactions with the medical profession in managing their chronic conditions.
A report is currently being finalised for ACTDGP and will be available on the HCCA website soon.
Saturday, August 1, 2009
HCCA Submission to the GP Task Force
Our community needs primary health care that is accessible, clinically and culturally appropriate, timely and affordable. We based our submission on our research and analysis of consumer experiences and expectations of general practice in the ACT.
We would like thank the hundreds of people who took the time to complete the GP Snapshot online survey and share their experiences and expectations of general practice in the ACT. There is a strong level of interest in the community about access to quality health services.
We would also like to thank the many people in our membership and wider networks who shared their experiences and perspectives with us.
A quick summary:
In our consultations we found that consumers’ experiences of primary health care were varied. Some consumers are very well placed with a regular GP who they can see when the need arises. Other consumers reported that the inadequate supply of GPs presents them with significant difficulties in accessing satisfactory care, including for urgent appointments, referrals, scripts or renewals of prescriptions.
Consumers also reported a level of disruption to their health care with the closure of general practices and move to larger corporate medical centres. The impact of closures of practices on consumers is amplified as many existing GP practices have closed their books to new patients.
One of the strategies consumers have developed to deal with the GP shortage is to have a number of general practices they access. A respondent to the GP Snapshot 2009 said that they had “2-3 GPs because we cannot always get to see the same GP due to difficulties getting an appointment” (Respondent 130).
The extension of “corporate” GP practices with a strong profit emphasis is a cause of dissatisfaction for many health consumers in the ACT; reasons given are reduced geographic access, especially if relying on public transport, no doctor of choice and a ‘production line’ consultation process – a particular concern for consumers with chronic and complex conditions.
The majority (81.2%) of respondents have a regular GP. Respondents were asked to provide reasons for not having a GP. The main reasons given for not having a GP were that the consumers can never get into their preferred GP (17.5%) and that GP Clinics are not taking new patients (16.7%).
The GP Snapshot 2009 was designed to capture a snapshot consumer experiences and expectations of general practice in the ACT.
The survey was developed based on discussions with consumer representatives and members of HCCA. Secretariat to the GP Task Force had seen a draft of the survey before publication. The survey was piloted with a group of HCCA members. It included issues such as whether consumers have regular GPs, waiting times, the quality of the interaction and demographic material and included a number of questions that the GP Task Force had asked practicing GPs.
The survey ran from 15 June - 3 July 2009 and was publicised through HCCA members and networks, and media coverage in The Canberra Times, ABC Canberra and 2CC. There were 635 responses. We think that the number of responses demonstrated a strong interest in the community around this issue.
Our preliminary analysis is included throughout the submission to the GP Task Force. A summary of findings is available online (151kb Pdf). HCCA will continue to analyse the results of the survey and post this to the HCCA blog over time.
Tuesday, July 21, 2009
Workshop: What do consumers need to effectively self-manage chronic conditions?

How patients and health professionals can learn from each other and share information about managing and self managing chronic conditions is one of the key areas of investigation by a collaborative research partnership that has recently been formed in the ACT. This research partnership is between the University of New South Wales, ANU College of Medicine, ACT Health and the ACT Division of General Practice.
While we know that self- management is important for those with chronic conditions, what information and support is needed to make it easier for both patients and health professionals to work together?
Darlene Cox, Executive Director of the Health Care Consumers Association says, “each person has their own unique experience of their condition and illness, which they manage on a daily basis”. But what would make this easier?
What works, what doesn’t work is the topic for conversation that Health Care Consumers' Association and the ACT Division of General Practice would like find out from people in the ACT at a seminar on August 11th. “This is an exciting opportunity for us to meet and hear from people in the ACT and share ideas and experiences of how they manage their chronic conditions”, she said.
To find out more about this seminar or to book a place, contact Health Care Consumers’ Association on ph 6290 1660.
Sunday, September 28, 2008
ACT Health Strategy for Chronic Conditions
The ACT Health Chronic Disease Strategy 2008 - 2011 is now available online as a Pdf (322kb).This document sets the direction for chronic disease prevention, detection and management in the ACT for the next three years.
HCCA supported consumer representatives on the Steering Committee and also made submissions during the consultation phase.
Thursday, July 24, 2008
SCIPPS - conference presentation
The Experience of Chronic Illness: Balancing Life and Illness
pdf (144 kb) of slides from her presentation
Tuesday, July 22, 2008
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
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 monthsThere 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 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.
Tuesday, June 10, 2008
The medical home: another model for managing chronic conditions?
I have been reading around the concept of the “medical home” . This has been a hot topic in the
I can't say that I am across the whole concept but I am interested in how it is developing in terms of primary care reform.
In short the term medical home describes:
a health care model in which individuals use primary care practices as the basis for accessible, continuous, comprehensive and integrated care. The goal of the medical home is to provide a patient with a broad spectrum of care, both preventive and curative, over a period of time and to coordinate all of the care the patient receives.
Source Deloitte Centre for Health Solutions
The research documents the critical features of the medical home which they have identified as forming the platform for guided self-care management. This can be useful in our discussions in terms of primary care model and managing chronic conditions.,
If you are interested in reading more about this you might like to follow the links below:
The American Academy of Pediatrics (AAP) introduced the medical home concept in 1967, referring to a central location for archiving a child’s medical record. In its 2002 policy statement, AAP expanded the concept to refer to primary care that emphasizes timely access to medical services, enhanced communication between patients and their health care team, coordination and continuity of care, and an intensive focus on quality and safety.
In 2007, a set of seven principles describing the characteristics of a practice-based care model was issued by four physician membership organizations representing over 300,000 physicians. The authoring organizations are: the American Academy of Family Physicians, the American College of Physicians, the American Osteopathic Association, and AAP. The clinicians represented by these organizations provide the majority of primary care in the
Source ICIC
“Disease Management and the Medical Home Model: Competing and Complimentary” — has been published in the peer reviewed journal of Disease Management and Health Outcomes. The author has arranged with the publisher to make copies available through his website.
It seems that there are more challenges to moving to this model that solutions at this stage. There are issues around the start up costs for clinicians and services, including IT infrastructure as well as training for clinicians.