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.


Catherine said...

Thanks for this overview Darlene. I was disappointed to have not been able to attend this session on SCIPPS but am pleased to read that many of the key issues for consumers have been raised.
Of particular interest and concern for me are the issues relating to 'health literacy'. In reference to these concerns I draw attention to the poignant remark from the SCIPPS research manager [that you posted at the end of your entry]. In her letter to you she referred to consumers as 'the experts'. I wholeheartedly agree though, I continue to be confounded by the fact that the government is investing an enormous amount of money into this study - but where are the consumers who are being paid, and otherwise supported, as researchers in SCIPPS? Am I alone in believing that genuine and lasting change in our health system will hinge upon consumers supported as researchers themselves - informing and supporting each other?

Darlene said...

Hi Catherine
Thanks for your comments. I agree with you your comments on health literacy. HCCA will be doing some more work around this issue.
I also agree that we need to develop the structures to support consumers as researchers within the existing system.
Interestingly this is happening in the community via the social web. The site, patients like me, is doing this to some degree. It is all about providing "a better, more effective way to capture valuable results and share them with patients, health care professionals, and industry organizations that are trying to treat the disease". I'd encourage you to have a look and I'd be interested in your thoughts.
They have an openness philosophy and believe that sharing our health care experiences and outcomes is good because when we share their data, collaboration on a global scale becomes possible.