Leanne Wells spoke at the 2016 Australian Self Medication Industry Conference on the topic of "Balancing innovation and evidence in self-management and self-care - a consumer perspective".
CHF welcomes the opportunity to provide feedback of the draft 5th edition Standards for General Practice Patient Feedback guide. We are pleased with the current state of the patient feedback guide and feel that the majority of the work in it respects consumers and will help practices best serve them. The suggestions provided in this submission will help practices communicate clearly and ethically to consumers about the need to collect data and the practices by which it is done.
I would like to introduce you to our new look Consumers Shaping Health. The Consumers Health Forum of Australia (CHF) is the nation’s peak body representing healthcare consumers and those with an interest in healthcare consumer affairs.
We live in an era of rapid change in healthcare and human services. Current developments such as digital health technology, community-based healthcare and the rise in consumer-directed care all point towards the growing influence of the consumer. Consumers Shaping Health aims to give you a quick overview of what CHF and our key partners do to shape health policy and programmes.
This is a re-launch of the Consumers Shaping Health e-newsletter we have been sending to stakeholders for some years. Now more people than ever will be receiving it as part of our aim to reach out to as many interested people as we can. The health consumer’s role is more important than ever with both clinicians and governments realising that healthcare works best when consumers have a central say about how it is designed and delivered. Many issues like Health Care Homes, health insurance, pharmacy, health literacy and quality and safety are crucial to consumers. Consumers Shaping Health will bring to you every two months news on what CHF and others are doing to ensure the consumers have impact in national health policy.
In September 2015, the Consumers Health Forum of Australia (CHF) was engaged by Primary Health Tasmania to undertake foundational work to scope the need for, and to support the potential establishment of, a healthcare consumer organisation (HCO) in Tasmania. Currently Tasmania is the only Australian state without a HCO.
CHF is providing this submission in response to the First Report of the Medicare Benefits Schedule (MBS) Principles and Rules Committee, and to add to our responses provided via the online survey about the First Report.
The need for and use of chaperones in the medical profession is a challenging issue for all concerned and one that CHF supports the investigation of. Due to the short timeframe in which submissions were called for we have not had time to consult our members explicitly on this submission. However, the use of chaperones was highlighted in a recent consultation we conducted regarding the accreditation of GP practices. During this consultation consumers discussed they feel that patients should be made aware of the need for a chaperone and what this entails before they interact with the practitioner. That the issue has arisen both in the media and in our consultation around GP accreditation prior to this we strongly support the review into the protocol and would be happy to offer our assistance to the review should further advice from the perspective of healthcare consumers be of interest.
CHF was pleased that one of the initial stated intentions in revising the Standards was to make them more consumer focused. However, we feel that this intent has not been realised in the current draft as a substantial number of the comments from our original submission and the consultation with healthcare consumers have not been taken into consideration. The following submission details this, firstly setting out the areas where we feel that our previous feedback has not been adequately incorporated into the new draft, followed by the key areas of concern that we acknowledge have been addressed. We strongly suggest that our feedback is taken into consideration in the next iteration of the Standards and in the evaluation of the pilot stage by surveying consumer’s attitudes to the changes. Should the RACGP require assistance in this, we would be happy to provide it.
This report includes a summary of findings and an appraisal of existing models used across the world to involve the public in heath technology assessment.
It is intended to inform discussions of the Medicare Benefits Schedule Review Taskforce about the ‘improvement of our Medicare Benefits Schedule (MBS)’ in order to ensure that it is ‘consistent with the latest clinical practice, or the best value healthcare. This report focusses on ways of improving the way the public are involved in the process of reviewing MBS Items.
This report also contains an Appendix which includes the search report from the literature review, a summary of the data extracted, links to the full data set extracted from the rapid review and additional information
The report contains a level of detail intended to reflect the complex nature of the subject. As an aid, the report includes a one page summary of the entire report, and an executive summary of key learning points that have been extracted from the report.
One page summary
Section title: Exploring definitions and terms
This section explores the variety of words and terms used throughout the English speaking world to describe ‘consumer engagement’ and associated concepts.
Key learning point
Involving the public in creating and agreeing the language used to describe engagement, participation and involvement will ensure that it is accessible, inclusive and therefore effective.
Section title: Detailed appraisal of five relevant models
This sections examines five internationally relevant models in detail, appraising the design and, where appropriate, key elements and limitations.
Key learning point
While these models represent a number of different ways of involving the public and evaluating involvement, there is no evidence-based validation for any of the models and therefore no endorsed option.
Section title: Relevant generic models of involvement
This section contains a summary of models of public involvement and engagement which, while relevant to health technology assessment, are more generic.
Key learning point
While there are a number of relevant international models, there is significant variation in the definitions of certain words used, such as engagement, and the purpose of any involvement or engagement. The Health Research Authority (UK) provides the best example of an organisation clearly articulating what they mean by public involvement, thus providing a robust linguistic framework of reference for future involvement models.
Section title: Significant themes
The significant themes identified were ‘social and ethical issues’, ‘public involvement’, ‘learning, training, education and development’.
Key learning point
While there may be challenges to including and involving everyone in the appraisal process, or ‘tensions between equity and efficiency', there are ways of overcoming some of these challenges. For example, creating inclusive learning and development opportunities for the public.
CHF is aware that many concerns have been raised about the awarding of the contract for the National Register to Telstra Health. However it is clear from the Bill that the Commonwealth is the custodian of the data in the register and as such has the responsibility to ensure that sufficient / stringent privacy safeguards and data governance arrangements are put in place to ensure the information collected is only used for the agreed purposes. This responsibility remains with them regardless of any contractual arrangements to operate the Register. The Bills provide those safeguards. It would be CHF’s expectation that the Bill’s intent with regard to privacy and data governance is upheld in appropriate provisions in the contractual arrangements in place between the Government and Telstra Health. With these legislative provisions and contractual obligations in place CHF believes the population health benefits exceed the risks and the Register should be established.
The Discussion Paper identified a number of key areas that the Panel wanted advice on to help shape its recommendations. Consistent with our desire to have a 21st century health system that has the consumer at its centre our submission concentrates on changes which would have a direct impact on consumers and would improve their access to a full suite of community pharmacy services.
Fundamental to our recommendations is the move away from an omnibus bilateral community pharmacy agreement to a series of arrangements that are negotiated on a multilateral basis with all key stakeholders. We look to deregulation of location and ownership to be the springboard for more innovation and meeting changing consumers’ expectations around when and where they get their medicines and other pharmacy services.
All of our recommendations take into account other health reforms that are underway, including the introduction of Health Care Homes, the role of Primary Health Networks and the move to more integrated care across primary and hospital settings. Community pharmacy needs to be included in all these reforms and we believe our recommendations position it to do so.