A voice for women's health

Submissions

AWHC Submission on the Health Research Strategy

National Health Committee's

The Introduction of Fit for Purpose Omics-based Technologies – Think Piece:

If this feedback is on behalf of an organisation, please name the organisation    Auckland Women’s Health Council

Please provide a brief description of the organisation if applicable    The Auckland Women’s Health Council (AWHC) was formed in 1988. It is an umbrella organisation for individual women and women’s groups in the Auckland region who have a commitment to women’s health issues. The focus of the Council is broad and spans many issues that are of interest to women, particularly those that impact on their health and the health of their families. The Council has a special interest in consumer rights, advocacy, ethics committees, medical ethics, screening programmes, and other issues that arose out of the Cartwright Inquiry. 

One of our members was involved in 'Te Mara Ira: Informing Cultural Guidelines for Biobanking and Genomic Research' as an interviewer and seminar presenter. 

Interest in this topic (eg consumer advocate, health professional, researcher, member of the public)    Consumer advocacy

Please indicate any material you believe should be withheld, if any, under the Official Information Act 1982    
Nil

Please indicate if you do not wish any part of your submission to be published on the NHC website    
The AWHC agrees to our submission being published on the NHC website


Consultation questions: The Introduction of Fit for Purpose Omics-based Technologies – Think Piece

1.    Is the description of the risks, issues and opportunities a good reflection of reality? Is anything missing?  
Yes/No   If yes, please provide details of these errors/omissions together with the relevant citations.

The AWHC welcomes the opportunity to comment on this document from a consumer perspective, but believes that consumer input before the document was finalised would have provided a more user-friendly “Think Piece.”

We also need to voice our concerns at the hasty and ill-conceived disbanding of the National Health Committee and its being subsumed into the Ministry of Health. The role of the NHC has been crucial in this area:
•    As a thought leader in the identification of critical issues and as a sponsor of important research 

•    As a mechanism for fostering informed debate in the public sphere 

•    In oversight and planning, and

•    As an important contributor and participant in international debate

We are not confident that these roles are easily transferable or that the Ministry of Health has the competencies and resources available to fulfil the requirements needed for such an important debate. We believe that this was not a wise move and is not in the best interests of New Zealand’s health system or patients.

The description in the document of the risks, issues and opportunities presented by omics-based technologies are heavily weighted in terms of the benefits, particularly the economic benefits. What is missing is the significant impact this will have on individuals and their families, and the need to ensure there is an emphasis on informed consent, on the problems around privacy and security of personal health information, and the lack of protection that New Zealand’s ethics committees currently provide for research participants.

The AWHC believes there is an urgent need for wide consultation with the general public on these issues and that this must be given a high priority. Work on omics-based technologies must not proceed any further until consumers are an ongoing part of the process.        

2.    The proposed approach is for a cross sectoral whole of system collaborative approach. Is this the best approach? What are the critical success factors necessary to make this work, who needs to be involved and how? 
Yes/No    Please provide any feedback in support of your response.

1. The AWHC believes a cross sectoral whole of system collaborative approach is the best way forward.

2. A foundational critical success factor will be whether all elements of the strategy are based on a partnership approach and inclusive of consumers, patients and society. This will require a fundamental shift in engagement - from the current Machiavellian assumption of working in our best interests to working with us to assure our interests are intrinsic and our needs are met.

3.   The 'Introduction of Fit for Purpose Omics -Based Technologies' diagram on Page 15 of the Think Piece document is a comprehensive summary of the important areas to be addressed. We would like consumers and society to underpin the whole structure.

4.    Based on our work and experience within the current system, we have concerns about
building a complex infrastructure on one which we believe is already compromised.  Our particular concerns (detailed below) are in the critical areas of Health Information Technology and the current data infrastructure; the dominant philosophy of practice; privacy and security; ethical oversight in research and practise; and informed consent. These concerns are exacerbated as they operate in a seriously fiscally constrained environment which is complex and short of resources. 

A. Health information technology and the current data infrastructure 
Some of our members are currently active in the Health IT space and have a long involvement with it. Consequently, this could be a very comprehensive answer. However we will restrain ourselves and mention just two areas - consumer access to their own health information and the difficulties and dangers of sharing information in the current system.

The advent of a patient portal is a move in the right direction for allowing consumers to access their own information. However, the current system is mediated by health professionals who choose who, how and what they offer consumers. In working in a number of health IT programmes, it is notable that consumer access to their information is NEVER a top priority. Provision for it is sometimes included at consumers’ insistence. However it is rarely or inconsistently delivered cf  MCIS programme and Shared Care Programme.   

Inter connectivity is a serious problem within the current system. Legacy systems have created an environment where it is difficult to share information across various related parts of the current health system.

The move towards ‘big data’ is encouraging and incentivising the sharing of personal information across the public sector. We are concerned at this development as it is not being accompanied by key features which would ensure that consumers can be confident in the use of their data – elements of transparency, accountability and inclusion.

We note that a ‘Consumer Expectations’ document, developed by the National IT Board consumer panel and setting out some very modest expectations, has not been progressed. This is not indicative of a system which welcomes meaningful consumer input.

We are also mindful of the long history of failure in government IT initiatives.

B. The dominant philosophy of practise
Within our current health system, the dominant philosophy of practise is still essentially paternalistic. Clinicians do not generally work easily as partners with their patients. This must change. The increasing availability of genomic data and personal health tracking technology mean that consumers as agents in their own health and well-being is inevitable. To unlock the full potential of Omics and free constrained health resources, health professionals must embrace new technologies and discard outdated ways of 'treating' patients. 

C.  Privacy and Security
This is poorly done currently. Audit of access to health information is rudimentary and, while reluctant to share information with the patient, there is very little scrutiny of access by other people within the health system. Certainly, there is very little provision for consumers to see who has accessed their information. Inappropriate access is badly monitored and treatment of breaches is inconsistent. 

D. Ethical oversight in research and practise 
The current system of ethical oversight is designed to facilitate research, not protect patients and research participants. Our real concern here is that recent changes have reflected a call by industry for NZ to be more open to the international pharma and international clinical trials - themes we see echoed in this Think Piece. We believe this has made us a soft touch internationally and has come at the expense of research participants. When things go wrong, participants are not protected by ACC, and find themselves individually battling multinational companies for redress and compensation. 

The line between innovative practise and research is unclear. Work needs to be done to strengthen this. 

A related concern is the Office of the Health and Disability Commissioner which was established to protect patients, but is currently operating in such a way that patient complaint processes are protracted and difficult. It is also poorly equipped to move beyond individual malpractice cases and into consideration of systems based analysis to effect real change. 

E. Informed consent
Informed consent is honoured more in the breach than in practise. Real informed consent is not hard but it does require time and information. Currently both of these are in short supply in our health system.

Consumer Input
The AWHC is aware that given the demise of the National Health Committee as an independent body and the failure of the Ministry of Health to allow time for holding the workshops that the NHC intended to organise that it is very unlikely that there will be many submissions from either individuals or consumer health organisations on this “Think Piece.”

On page 9 of the “Think Piece” is the statement that “the various social and ethical issues will need to be dealt with early on to ensure citizen involvement… Individual values, the right to be involved and the right to choice will need to be honoured.” There must be a commitment to engage with the general public as part of an ongoing process, and that this is undertaken in a manner that is not just about gaining agreement or compliance of health consumers. For example, the change management processes outlined at the bottom of page 10 seems to be more about gaining informed compliance to a vision that consumers may not share. 

It is also essential that consumers are involved at all three levels of the strategic work programme – macro level, meso level, and micro level. 
  

3.    The think piece proposes the use of a common thinking tool (a principles based framework). Is this a good approach? If not, what else might be a better approach? If it is, are the proposed principles generally appropriate and/or is anything missing?

Yes/No      If yes, please make your proposal(s) (with rationale) below:

The outcome and implementation principles suggested need to be underpinned by three core principles for consumers and NZ society - transparency, accountability and inclusion. This will ensure that they deliver for all our population.

1. Outcome Principles

A. Best outcomes for users, patients, and the country as a whole.
 
These need to be established by and with them, not for them. Transparent processes will allow an understanding of what is being done and why, accountability mechanisms will allow scrutiny and comment, and inclusion will inform processes to ensure they are fit for purpose and meeting genuine need. At an individual level, inclusion will also inform and empower self-management. 

B.  To safeguard our people, identity and values, we need transparency to enable scrutiny, accountability to ensure equity and inclusion to ensure that our identity and values are reflected in actions and outcomes.

C. The former two outcome principles must always be paramount. While this principle is important, we need transparency to assess the public benefit and ensure it is not outweighed by commercial and research agendas, accountability so that we are aware of the cost/ benefit compromises, and inclusion so that we are able to influence these.

2. Implementation Principles. 
For the most part, the implementation principles are broad and sector wide. They must also consider the specific principles of engagement with consumers and New Zealand society - transparency, accountability and inclusion.

Excellent work has already been done within Aotearoa to inform genomic practise with Te Mata Ira. While these guidelines were developed as cultural guidelines with particular relevance to Maori, the underlying principles are universal and must be incorporated into future practice. 

A. At a societal, patient and population level, the Collective Approach principle needs to be supplemented with a commitment to partnership and inclusion. The shared risk/ shared gain approach needs recognition that risk for individual consumers can be painful and catastrophic and, much like screening, individual gain may be nothing more than a contribution to the greater good and future generations. 

We are encouraged by the development internationally of mechanism which enable ownership and control of databases by patients. 

B. Integration of health, science, education and business
While we support this principle, we are also aware that inclusion of consumers and society is crucial and the challenges this poses are immense. The essential power and resource imbalances for consumers must be addressed and must go beyond ensuring they are well informed. Consumers and New Zealand society must be seen as primary stakeholders - not just as suppliers and buyers of Omics-based products. 

This is one area where the current Machiavellian assumption of doing good for us, but without us, is particularly dangerous and pernicious.

C. Essential infrastructure
The essential infrastructure needs to go beyond engagement with citizens and encompass inclusion. It also needs to provide for transparency and accountability of process and decision-making. 

We have outlined a number of our particular concerns with the current infrastructure in 2.


4.    Is there any other feedback you wish to provide?
Yes/No    Please provide any other feedback.

The AWHC believes a ‘fit for purpose Omics-based technology’ infrastructure must include non-biomedical, non-clinical public interest group to act as educator, conscience and critic to the system as it develops. To offset the power of commercial interests, it needs to be fully resourced and funded. Most importantly, it must be independent – from industry, research, health professional, Ministry and government influence.

Please also note that the AWHC supports the content of the submission made by the Federation of Women’s Health Councils.

April 2016





SUBMISSION ON THE REVIEW OF THE HEALTH & DISABILITY COMMISSIONER ACT 1994 & CODE OF RIGHTS - 2014

The Auckland Women’s Health Council (AWHC) is an umbrella organisation for individual women and women’s groups in the Auckland region who have a commitment to women’s health issues. The focus of the Council is broad and spans many issues that are of interest to women, particularly those that impact on their health and the health of their families. The Council has a special interest in consumer rights, advocacy, ethics committees, medical ethics and other issues that arose out of the Cartwright Inquiry. 

The AWHC made extensive oral and written submissions during the development of the Code of Consumers’ Rights in the mid 1990s and also made a submission to the first Review of Code in 1999 and to the second and third Reviews of the Act and Code in 2004 in 2009. The Council notes that some of the issues we raised and the recommendations we made in our 1999, 2004 and 2009 submissions are – 15 years later – still relevant and we have therefore chosen to reiterate them.   

Question 1
Do you think that the Act should be amended in any way?

Retain the 5-yearly review
The AWHC recommends retaining the provision of a 5-yearly review of the Code. Consumer groups have ongoing concerns and it would be unacceptable to have to wait a decade before being provided with the opportunity to have our concerns addressed; for example, concerns such as the need for timely and effective resolution of complaints about disability support services, the emergence of new issues such as off label prescribing and the use of medical devices that do not have FDA approval and fall outside of existing monitoring and safety standards, and when the HDC refuses to undertake an investigation into such issues. Unlike health professionals who have been able to get changes to the Code of Rights introduced outside of the Review process, consumer groups do not have the same clout. 
As we stated during the 2004 and 2009 review processes the Council strongly recommends that a new provision be introduced that prevents the Commissioner from being able to suggest, support or introduce changes to the Code of Consumers’ Rights without widespread consultation with consumers and consumer/community groups. The necessity for such a provision is the change to Right 7(10) that was supported by the former Commissioner without consultation with the public/ consumers.   

Ethics committees
In its submission on the 1999 review the AWHC wrote:
“The AWHC wishes to raise again the issue of where ethics committees should be placed. Council members believe that it is inappropriate for the Health Funding Authority to have control over ethics committees and to be responsible for resourcing them. The Council has always maintained that ethics committees should be independent of the HFA. Recent events have also strengthened our position on the need for independence. The Council therefore recommends that ethics committees come under the wing of the Office of the Health & Disability Commissioner but be independent in the same way that it is proposed that advocates operate independently of the Commissioner.”

In its submission on the 2004 review the AWHC wrote:
“The AWHC strongly recommends the establishment of a national system of ethics committees which comes under the umbrella of the HDC. Ethics committees should not be under the control of the Ministry of Health. The Council recommends appointing a Director of Ethics who has jurisdiction over all human ethics committees.”

Since the 2009 review, the AWHC’s position on this issue has been reinforced by 4 – 5 years of two of our members attending HDEC ethics committee meetings. The role of ethics committees in protecting the interests and well-being of research participants is no longer at the centre of how ethics committees operate. The interests of the researchers and the promotion of clinical trials are now central to the ethical committee review process.

Advocacy services
The AWHC believes that the current contracting model for providing advocacy services is not appropriate and that changes are needed. 

The Council supports a change that would result in an independent office of the Director of Advocacy who would be able to employ the advocates directly. It is essential that the advocates are independent of the Commissioner(s) and that the public perceives that the advocacy service and the advocates themselves are independent, but part of the public health system.

Given the history with the first Commissioner’s slashing the advocacy budget, and the current Commissioner doing the same thing, the Council strongly recommends that the Director of Advocacy should have his/her own budget and should not have to compete with other services provided by the Office of the Health and Disability Commissioner.

Naming providers found in breach of the Code
As clearly stated in the AWHC’s submission on the previous Commissioner’s Naming Policy consultation document, the Council supports naming all providers found in breach of the Code. We therefore recommend that the Act be amended to include a specific section allowing the Commissioner to name all providers. 

The Council also supports amending the Act to give the Commissioner the power to suppress identifying information relating to parties not found in breach as well as parties found in breach prior to the conclusion of all processes.

Amendments arising out of the 2009 review
The AWHC supports the last three of the proposed amendments arising out of the 2009 review, but as already noted above we do not support the first one.

Question 2
Do you think that the Code should be amended?
The AWHC supports reversing the change made to Right 7(10) of the Code of Consumers’ Rights. It should read “No body part or bodily substance removed or obtained in the course of a health care procedure may be stored, preserved, accessed for research purposes, or used otherwise without the informed consent of the consumer.”
The need for this change is the increasing amount of research and clinical trials that are now being undertaken on body parts and tissue samples without the knowledge or consent of the consumer. The environment has changed dramatically in the past 5 – 10 years to such an extent that those in the clinical trials and pharmaceutical industry are now able to make large amounts of money from research on tissue samples that are being accessed and used without the knowledge or consent of patients. 

The AWHC remains committed to the statements made in our submission during the 2009 Review of the HDC Act and Code. They are as follows:  

•    Right 1 – the addition of compassion
The AWHC is strongly supportive of the campaign to include the addition of the right to compassion as part of Right 1. The Council therefore recommends that “Right 1: Right to be Treated with Respect” is amended to “Right 1: Right to be treated with compassion and respect”. 

We further recommend that an additional clause be added under Right 1, 
“(4) Every consumer has the right to have services provided with compassion, including a prompt and humane response to distress, pain and suffering.” 

The AWHC totally agrees with the statements made by the Centre for Compassion in Healthcare:

 “Compassion is defined as “the humane quality of understanding suffering in others and wanting to do something about it”. 

We believe that caring and compassion are core values that motivate health professionals but our institutions and professions have evolved in ways that limit the expression of compassion. While the majority of health consumers are satisfied with their care, the increasingly technical nature of healthcare means that some consumers have experiences of healthcare that can feel thoughtless or uncaring and that fail to recognise or attend to distress and suffering. We need to restore the balance between clinical treatment and compassionate caring. 

While it may be hard to define a standard for compassionate caring, a lack of compassion is easily recognised when the basic human needs of health consumers are disregarded. This neglect is apparent when pain and suffering is ignored, when waiting is unexplained, when consumers are left cold or hungry or left to lie on soiled linen, when consumers are addressed with unfeeling detachment, when emotional needs are brushed aside, when apology or support is denied, and when hope is needlessly extinguished. The test of the Code of Rights is in the breach. The lack of compassion is usually obvious. 

On the positive side, compassionate caring is defined less by the act than by the emotional response of the consumer and family – the experience of loving kindness and the relief of pain, fear and suffering.” 

The AWHC does not support the argument that the right to be treated with respect (Right 1) and the right to be treated with dignity (Right 3) covers the concept of the right to be treated with compassion.

•    Right 5(1)
The AWHC continues to support the introduction of a national interpreting and translation services as they exist in some other countries. The Council believes that the Code of Consumers’ Rights, should apply to all consumers, not just those that are reasonably fluent in English. Informed choice and consent are key components of the Code of Rights and it is unacceptable to exclude those who do not understand or speak much English. The Council is also opposed to the use of family members or friends to assist with communication as this is very unsatisfactory and is particularly inappropriate for women.  

The AWHC recommends that the HDC take on board the necessity to lobby government for interpreter services to ensure that there are no barriers preventing particularly vulnerable migrant populations from being able to exercise their rights under the Code. It is obvious that the need is there as there are very few complaints being received about language difficulties between providers and consumers. 

•    Right 7(4)
The AWHC recommends that the provisions set out under Right 7(4) remain exactly as they are. The AWHC does not support the amendment of Right 7(4)(a) 
“It is in the best interest of the consumer, or in the case of research, is not known to be contrary to the best interests of the consumer and has received the support of an ethics committee.” 

•    Right 7(6) Written consent
The AWHC recommends that the provisions set out under Right 7(6) remain exactly as they are. The Council does not support any attempt to weaken or reduce the need for written consent. In fact the AWHC believes that there are currently situations where written consent is not required and it should be, eg written consent for HIV screening during pregnancy and during labour.

•    Right 7(10)
The AWHC remains outraged that the former Commissioner supported a significant amendment to Right 7(10) of the Code without consultation with consumers. The AWHC notes that following the first review in 1999 then Commissioner Robyn Stent was “not persuaded that Right 7 (10) should be amended.” Yet researchers/health professionals were able to overturn the Commissioner’s very sound judgement on this issue.

The AWHC believes that there is a need to reverse the change made to Right 7(10) for a variety of reasons, not least because ethics committees no longer offer consumers the kind of protection they did in the immediate aftermath of the Cartwright Inquiry.

5 February 2014



REVIEW  OF THE HEALTH & DISABILITY COMMISSIONER ACT 1994 & CODE OF RIGHTS - 2009

The Auckland Women’s Health Council (AWHC) is an umbrella organisation for individual women and women’s groups in the Auckland region who have a commitment to women’s health issues. The focus of the Council is broad and spans many issues that are of interest to women, particularly those that impact on their health and the health of their families. The Council has a special interest in consumer rights, advocacy, ethics committees, medical ethics and other issues that arose out of the Cartwright Inquiry.

The AWHC made extensive oral and written submissions during the development of the Code of Consumers’ Rights in the mid 1990s and also made a submission to the first Review of Code in 1999 and to the second Review of the Act and Code in 2004. The Council notes that some of the issues we raised and the recommendations we made in our 1999 and 2004 submissions are – ten years later – still relevant and we have therefore chosen to reiterate them.

Question 1
Is it necessary to review the Act and Code every 3 – 5 years? Would 10-yearly reviews suffice?
The AWHC recommends retaining the provision of a 3-5 yearly review of the Code. The Council does not agree with the statement that the requirement is a hangover of initial fears on the part of provider groups. Consumer groups have ongoing concerns and it would be totally unacceptable to have to wait a decade before being provided with the opportunity to have our concerns addressed. Unlike health professionals who have been able to get changes to the Code of Rights introduced outside of the Review process, consumer groups do not have the same clout.

As we stated during the 2004 review process the Council strongly recommends that a new provision be introduced that prevents the Commissioner from being able to suggest, support or introduce changes to the Code of Consumers’ Rights without widespread consultation with consumers and consumer/community groups. The necessity for such a provision is the change to Right 7(10) that was supported by the current Commissioner without consultation with the public/ consumers.

Question 2
What amendments to the Act or Code in relation to disability do you suggest and why?

The AWHC supports the appointment of a designated Disability Commissioner within the office of the HDC and supports the introduction of amendments to the Act that would allow for this to be implemented. The Council is also aware that the issues for the disability sector are far wider than health and that this may not be the option that people with disabilities would prefer. Nonetheless, the Council
believes that changes must be made to the HDC Act that would allow complaints relating to access to services, including how services are accessed and funded, should be able to be taken to and investigated by an independent Disability Commissioner.

The Council notes that the government’s recent decision not to proceed with the establishment of a special Disability Commission strengthens the necessity of the HDC addressing the need for some changes “in legislation that will enable the HDC to better serve consumers using disability services.”

Question 3
Should the Act and the Code be amended to include a right to access publicly funded services? If so, how would such a right be framed?

In its submission on the 1999 review the AWHC wrote:
“The Council is still of the opinion that access to health services and unacceptable delays in accessing health services must also be addressed under Right 4 within the Code as they do represent aspects of appropriate standards of health care. This was our position in our 1995 submission and events since then have simply served to strengthen our conviction on this issue.”

In 2004 the AWHC stated that the Council remained convinced that timely access to publicly funded health services must be included in the Code and that. recent events had reinforced the necessity for such a principle.

The Council’s position on this issue remains unchanged. We suggest the right to access publicly funded services be included as part of Right 4, and that the HDC produce a draft of this and the other changes to the Code, eg Right 7(10).

Question 4
Should the Act and/or the Code be amended to include health information privacy? If so, what amendments do you suggest and why?

The AWHC supports the Privacy Commissioner retaining the primary responsibility for issues to do with health information privacy. The Privacy Commission now has considerable experience and protocols for dealing with breaches by a health provider of their legal and ethical duties under the health Information Privacy Code.

The Council agrees with the Privacy Commissioner’s comments that the Code of Consumers’ Rights would benefit from amendment so that it “appropriately supplements privacy rights in the sector and fills gaps not well covered by the Privacy Act.”

Question 5
Is the current contracting model for providing advocacy services appropriate? If not, which of the two alternative options identified do you support and why?

The AWHC agrees that the current contracting model is not appropriate and that changes are needed.

The Council supports the third option of an independent office of the Director of Advocacy who would be able to employ the advocates directly. It is essential that the advocates are independent of the Commissioner(s) and that the public perceives that the advocacy service and the advocates themselves are independent, but part of the public health system.

Given the history with the first Commissioner’s slashing the advocacy budget, the Council strongly recommends that the Director of Advocacy should have his/her own budget and should not have to compete with other services provided by the Office of the Health and Disability Commissioner. This was something that the AWHC argued for in our previous submission in 2004:
“Five years on the AWHC strongly recommends there be a nationally based service employed by the Director of Advocacy under a direct budget/contract with the Minister. Only that way will there be the ability to achieve consistency, transparency & account-ability that has been so lacking under the current model of services. It is unacceptable that there has been such huge variability in services for consumers to date. The AWHC does not think there is a need for managers - their salary can employ several more advocates on the ground which is what is needed.”

Question 6
Do you suggest any amendment to the Act in relation to appeal rights or naming decisions?

The AWHC does not support providers having the right of appeal when found in breach of the Code of Rights or being named once the decision has been made that they have breached the Code. As the consultation document notes providers currently have the option of challenging the Commissioner’s opinions through the Office of the Ombudsman, or through a judicial review.

The Council believes that having the right of appeal could result in the complaints process being prolonged as health providers use every avenue open to them to fight the Commissioner’s opinion.

Question 7
Do you suggest any change to the definitions in the Act relating to health services?

The AWHC agrees that there is a good argument to be made for clarifying and simplifying the definitions of “health services, “health care procedure,” “provider,” and ”consumer.” However, any changes or amendments must ensure that consumers are covered by the HDC Act and Code under all possible scenarios.

The AWHC is also concerned at the current Commissioner’s belief that the Ministry of Health does not fit under any of these definitions and this must be remedied to make it abundantly clear that the Ministry of Health is in certain scenarios – eg driving vaccination campaigns, insisting on being the sole provider of health information, the Medsafe website, etc – responsible under the HDC Act and Code of Consumers’ Rights.

Question 8
Are the definitions in the Act relating to disability services appropriate? If not, what changes do you suggest?

The AWHC agrees that the definitions relating to “disability services” and “disability services consumers” may need to be amended if changes are made and a designated Disability Commissioner is appointed.

This is further argument for the need to keep the reviews of the HDC Act and Code at 3 – 5 years in order to enable further amendments and fine tuning to be made in a timely manner following the introduction of changes.

Question 9
Do you agree that the Office of the Health and Disability Commissioner should be renamed the “Health and Disability Commission?”

Yes.

Question 10
Do you support clarifying
the status of Deputy Commissioners pending possible reappointment?
The AWHC supports the proposal to amend the HDC Act in order to provide greater clarity about the process of appointing Deputy Commissioners.

Question 11
Are the functions of the Commissioner appropriate? Is not, what amendments do you suggest and why?

In its submission on the 2004 Review the AWHC wrote:
“The AWHC remains strongly supportive of the purpose of the HDC Act being “to promote and protect the rights of health consumers and disability services consumers.” While the Council agrees with the general principle behind the mottos referred to in the consultation document of “resolution not retribution” and “learning not lynching” (page 14) the Council believes the vast majority of consumers are not after retribution or lynching. They do, however, want to see changes so that what happened to them does not happen to anyone else. It’s the medical professions that use these terms and the Council is not happy with the focus being on not upsetting health professionals…

There is now a need to refocus attention on promoting and protecting the rights of consumers. The AWHC has become increasingly concerned at the loss of insight into how the health system continues to operate in ways that disempower consumers/ patients and the imbalance of power and control that still exists between consumers and health professionals.

The importance of the office of the HDC needing to focus on the needs of consumers is a theme that is reiterated in several sections of the Council’s submission.”

Because there has been very little improvement in the way the health system continues to operate, the AWHC’s position remains unchanged. The Council has not seen any significant changes in the HDC as a result of the consumer forums held several years ago, and the Consumer Advisory Group appears to be just window dressing.

Furthermore, the Council would argue that as there are now robust processes that are working well for dealing with complaints, it is time for the Commissioner to move into policy areas around the protection of consumers’ rights within the broader health system. The current roll out of screening programmes and the vaccination campaigns being under-taken by the Ministry of Health are just two examples of this need to focus on systemic issues.

The comments made by the AWHC In 2004 are unfortunately still as relevant today as they were five years ago:
“The AWHC would like to see the Commissioner taking a higher profile role in advocat-ing for the rights of consumers on an ongoing basis on important issues such as women in the National Cervical Screening Programme losing their rights to be consulted over access to their GP and hospital records; the implications of the National Immunisation Register and the Meningococcal Vaccine campaign; the NHI; consumer rights to information and to make informed choices on behalf of their children; advocating for a national interpreting and translation service; direct-to-consumer advertising; the use of Guthrie Cards; ethics committees, etc.”

Question 12
Do you think that the Act should be amended to require the HDC to refer all complaints about registered health practitioners to the relevant registration authority?

The AWHC agrees with the suggestion that all complaints about registered health practitioners received by HDC should to be referred to the relevant registration authority, with the proviso that this should occur once the HDC has investigated the complaint and dealt with it.

Question 13
Should section 38 of the Act be revised to better reflect its purpose?

The AWHC does not believe that changes to this section of the Act are really needed.

Question 14
Do you consider it is necessary or desirable to amend the provisions of the Act governing the Commissioner’s investigations? For example, by giving complainants the opportunity to comment of the Commissioner’s provisional opinion even if it contains adverse comment about the provider(s), or by setting prescribed timeframes?

The AWHC supports consumers getting as many opportunities for input into the process as the provider prior to the Commissioner forming a final opinion. The current process is unfairly balanced in favour of the provider. The Council therefore considers it necessary to make the appropriate amendments.

Question 15
Do you suggest any amendment to the Act in relation to the Commissioner naming providers found in breach of the Code?

As clearly stated in the AWHC’s previous submission on the HDC’s Naming Policy consultation document, the Council supports naming all providers found in breach of the Code. We therefore recommend that the Act be amended to include a specific section allowing the Commissioner to name all providers.

The Council also supports the proposal to amend the Act to give the Commissioner the power to suppress identifying information relating to parties not found in breach as well as parties found in breach prior to the conclusion of all processes.

Question 16
Do you agree that the fine for an offence under the Act should be increased? If so, do you agree that the maximum fine should be $10,000?

The AWHC agrees that the maximum fine should be increased from $3,000 to $10,000.

This is yet another argument for the need to keep the reviews of the HDC Act and Code at 3 – 5 years in order to enable the fine to be regularly increased to keep pace with inflation.

Question 17
Do you consider that ethics committees should be under the oversight of the HDC?

In its submission on the 1999 review the AWHC wrote:
“The AWHC wishes to raise again the issue of where ethics committees should be placed. Council members believe that it is inappropriate for the Health Funding Authority to have control over ethics committees and to be responsible for resourcing them. The Council has always maintained that ethics committees should be independent of the HFA. Recent events have also strengthened our position on the need for independence. The Council therefore recommends that ethics committees come under the wing of the Office of the Health & Disability Commissioner but be independent in the same way that it is proposed that advocates operate independently of the Commissioner.”

In its submission on the 2004 review the AWHC wrote:
“The AWHC strongly recommends the establishment of a national system of ethics committees which comes under the umbrella of the HDC. Ethics committees should not be under the control of the Ministry of Health. The Council recommends appointing a Director of Ethics who has jurisdiction over all human ethics committees.”

The AWHC’s position on this issue remains unchanged, as indicated by the article that appeared in the November issue of the AWHC newsletter titled “NZ Ethics committees in trouble.” Copy attached to our submission.

Question 18
Do you consider that the Act should be amended to provide independent expert advisors contracted by HDC with the same degree of immunity enjoyed by “members, office holders or employees” under the Crown Entities Act?

The AWHC strongly supports amending the Act to provide expert advisors with the immunity under the Crown Entities Act.

Question 19
Should the Act be amended to allow information obtained during an investigation to be withheld, while the investigation is ongoing?

The AWHC supports amending the Act to allow information to be withheld during the investigation process.


Review of the Code of Consumers’ Rights

Question 20
Do you think any of the above Code rights should be amended?


· Right 1 – the addition of compassion
The AWHC is strongly supportive of the campaign to include the addition of the right to compassion as part of Right 1. The Council therefore recommends that “Right 1: Right to be Treated with Respect” is amended to “Right 1: Right to be treated with compassion and respect”.

We further recommend that an additional clause be added under Right 1,
“(4) Every consumer has the right to have services provided with compassion, including a prompt and humane response to distress, pain and suffering.”

The AWHC totally agrees with the statements made by the Centre for Compassion in Healthcare:

“Compassion is defined as “the humane quality of understanding suffering in others and wanting to do something about it”.

We believe that caring and compassion are core values that motivate health professionals but our institutions and professions have evolved in ways that limit the expression of compassion. While the majority of health consumers are satisfied with their care, the increasingly technical nature of healthcare means that some consumers have experiences of healthcare that can feel thoughtless or uncaring and that fail to recognise or attend to distress and suffering. We need to restore the balance between clinical treatment and compassionate caring.

While it may be hard to define a standard for compassionate caring, a lack of compassion is easily recognised when the basic human needs of health consumers are disregarded. This neglect is apparent when pain and suffering is ignored, when waiting is unexplained, when consumers are left cold or hungry or left to lie on soiled linen, when consumers are addressed with unfeeling detachment, when emotional needs are brushed aside, when apology or support is denied, and when hope is needlessly extinguished. The test of the Code of Rights is in the breach. The lack of compassion is usually obvious.

On the positive side, compassionate caring is defined less by the act than by the emotional response of the consumer and family – the experience of loving kindness and the relief of pain, fear and suffering.”

The AWHC does not support the argument that the right to be treated with respect (Right 1) and the right to be treated with dignity (Right 3) covers the concept of the right to be treated with compassion.

· Right 5(1)
The AWHC continues to support the introduction of a national interpreting and translation services as they exist in some other countries. The Council believes that the Code of Consumers’ Rights, should apply to all consumers, not just those that are reasonably fluent in English. Informed choice and consent are key components of the Code of Rights and it is unacceptable to exclude those who do not understand or speak much English. The Council is also opposed to the use of family members or friends to assist with communication as this is very unsatisfactory and is particularly inappropriate for women.

The AWHC recommends that the HDC take on board the necessity to lobby government for interpreter services to ensure that there are no barriers preventing particularly vulnerable migrant populations from being able to exercise their rights under the Code. It is obvious that the need is there as there are very few complaints being received about language difficulties between providers and consumers.

· Right 7(4)
The AWHC recommends that the provisions set out under Right 7(4) remain exactly as they are. The AWHC does not support the amendment of Right 7(4)(a)
“It is in the best interest of the consumer, or in the case of research, is not known to be contrary to the best interests of the consumer and has received the support of an ethics committee.”

· Right 7(6) Written consent
The AWHC recommends that the provisions set out under Right 7(6) remain exactly as they are. The Council does not support any attempt to weaken or reduce the need for written consent. In fact the AWHC believes that there are currently situations where written consent is not required and it should be, eg written consent for HIV screening during pregnancy and labour.

· Right 7(10)
The AWHC remains outraged that the present Commissioner supported a significant amendment to Right 7(10) of the Code without consultation with consumers. The AWHC notes that following the first review in 1999 then Commissioner Robyn Stent was “not persuaded that Right 7 (10) should be amended.” Yet researchers/health professionals were able to overturn the Commissioner’s very sound judgment on this issue.

The AWHC believes that there is a need to reverse the change made to Right 7(10) for a variety of reasons, not least because ethics committees no longer offer consumers the kind of protection they did in the immediate aftermath of the Cartwright Inquiry.

As stated in its previous submission the AWHC strongly recommends that a new provision be introduced that prevents the HDC from being able to suggest, support or introduce changes to the Code of Consumers’ Rights without wide-spread consultation with consumers. It is essential to ensure that there is no repetition of such events and that the current Commissioner goes down in history as the only HDC to be able to support an amendment to the Code without consultation with health and disability services consumers.

As noted in previous submissions, the AWHC also continues to oppose provider resource constraints being an acceptable excuse for providers who are in breach of the Code of Rights.

Question 21
Do you agree that section 47 should be amended to clarify that the Director of Proceedings may take action only upon referral from the Commissioner?

The AWHC supports amending sections 47 and 14(1) of the Act to make it clear that the Director of Proceedings may take action only upon referral from the Commissioner.

Question 22
Should the Director of Proceedings have the same powers as the Commissioner under section 62 until a decision has been made pursuant to section 49 to issue proceedings?

The AWHC supports the Director of Proceedings having the same investigative powers as the Commissioner for the period from referral until a decision has been made under section 49 to issue any proceedings.

Question 23
Should the Director of Proceedings have to make a decision to issue Human Rights Review Tribunal proceedings within a certain timeframe, after which point the Director might be deemed to have “failed” to bring proceedings?

The AWHC recommends that there should be no timeframe on the Director of Proceedings’ decision to issue Human Rights Review Tribunal proceedings.

Question 24
Should an aggrieved person be able to bring proceedings where the Director of Proceedings has decided to withdraw a claim, or reverses an initial decision to issue proceedings?

Yes.

Question 25
Should the Act be amended to state that any limitation period under the Limitation Act should start to run from the date on which the Commissioner finds a breach of the Code? If so, how long should the Director of Proceedings or individual person have to bring a claim once the Commissioner has found a breach?

The AWHC supports a limitation period of 2 years that starts once the Commissioner finds a breach of the Code.

Question 26
Should the term “aggrieved person” be defined? Should it be limited to health or disability services consumers?

The AWHC supports there being a definition of the term “aggrieved person,” with the proviso that it is not limited to a consumer, and that it should not be interpreted in an unduly restrictive manner.

Question 27
Do you suggest any amendment of the Act in relation to the Commissioner’s jurisdiction over disability services?

As stated in response to Question 2, the AWHC believes that changes must be made to the HDC Act that would allow complaints relating to access to services, including how services are accessed and funded, to be taken to and investigated by a designated Disability Commissioner based within the office of the HDC.

Question 28
Do you think a Disability Commissioner with a dedicated focus on disability issues and services should be created within HDC?

Yes – refer to comments made in response to Question 2.

23 February 2009

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