Have been talking to the Health Survey team here at the Ministry, they are looking at the current Health Survey and whether there are any gaps/changes required - I see one in the use of and preference for technology in access to and delivery of health and a related question about the use of data.
Is anyone aware of other jurisdictions including digital and data related questions in a consumer survey like this. Have a couple of links but interested in the wisdom of this group:
Hi Jon. I am certainly aware that we do a number of patient satisfaction surveys. We also did a digital health type survey as part of the SmartHealth work that looked at access to digital devices and patient experience in OPC. Great things to do I think.
Thanks - do the satisfaction ones relate to data use or access to services (eg. technology?)
Jon
Hi John,
No surveys but I know Nigel Millar has been visiting consumer groups around the South Island to talk and listen around sharing health
data.
As a GP it seems that I feel the weight of responsibility heavy on my shoulders as the patients will use me to be sure their information
is kept safely. They seldom know about where or how their data is kept.
This tells me that they (understandably) want a person they know and trust to keep their data safe…… not an organisation.
Makes sense and would be my approach when I was the consumer… where is the neck I can wring if my data escaped.
Cheers M
You may find Samantha Fitch’s PhD useful. It’s titled “ Trust, information-sharing and the doctor-patient relationship : a multi-method, empirical-ethics study of New Zealand general practice ”
Here is the abstract.
Information-sharing in health care presents opportunities for efficient and effective patient care based on the exchange of high quality information, improved decision making, and increased collaboration and coordination of care across the system. However, it also presents concerns around the control of information and maintaining trust in the privacy, confidentiality and security of information. These concerns reflect the difficulty in balancing how to share information in ways that protect the interests of the individual and any overriding interests of the public. This thesis reports on research exploring trust and information-sharing between patients and General Practitioners (GPs) in New Zealand using a multi-method, empirical-ethics approach. This combines a critical realist theoretical perspective with critical applied ethics. The findings from two empirical studies outline expectations that GPs ensure patient privacy and confidentiality, only sharing information as necessary or appropriate. While levels of trust in health professionals and organisations are high, patient knowledge and awareness of the rules and practices around information-sharing are low. Further these matters are not often discussed between GPs and patients, and patients are not concerned by this. Patients showed little concern about information being shared within the health system or with health professionals, but had concerns about the potential implications of third-party sharing. While some actions may disrupt or breach trust there are ways that GPs can seek to rebuild trust with patients. The findings con rm the importance of trust for the GP{patient relationship and suggests that patients’ trust GPs to use and share information when necessary and for their benefit. In an ethical analysis based on Beauchamp and Childress’ four principles, this thesis suggests that trust is best conceived as a foundational aspect of what it is to interact with patients in a way that fulfils GPs’ obligations. This thesis suggests that an orientation towards building and maintaining trusting GP{patient relationships provides a more robust and relationally focused way of balancing conflicting ethical obligations as exist around information-sharing.
Let me know if you want it and I’ll send you a copy of the thesis.
yep seems to fit with my anecdote. I would like a copy please
What’s your email address Martin so that I can send you a copy?
More on Trust…
Alex Poor’s Thesis
https://openrepository.aut.ac.nz/handle/10292/10190
This thesis examines the reasons why a key policy goal of New Zealand’s National Health IT Board - to provide electronic health records to all New Zealanders, with an essential prerequisite being greater connectivity between sector information systems - has
not materialised and, indeed, seems to be such a distant prospect. The research focuses on the Auckland metropolitan region, and where information exchange intersects with the primary care sector.
The research was conducted by interviewing some of the key policy actors involved in this issue, all of whom could speak from different parts of the sector and held different perspectives and roles in the implementation of the policy. A theoretical framework
based on the Policy Implementation literature was utilised, which identifies the extent to which there is both policy congruence and policy clarity amongst stakeholders.
The thesis first encompasses the complex and fragmented history of New Zealand’s health system, and identifies relevant international literature which recommends avoiding either ‘top down’ or ‘bottom up’ implementations of IT systems in health. A strong theme
was that the focus must begin with implementing standards, and incentivising sector stakeholders to work on that basis.
Participant interviews revealed a perception that the centre is relatively weak, and that there has been no clear articulation of a ‘burning platform’ for change and there has been no targeted incentivising, such as has been seen in the US since 2009. The structure
of the health system itself - particularly the primary care funding model - was also repeatedly noted by participants as providing a disbenefit to support a goal such as interoperability. Another key issue was the dissatisfaction expressed by primary care
informants about their PMS products and vendors. Those working in primary care appear to sharply feel a power imbalance, both in the relationship with DHBs and with their software vendors.
The interoperability policy goal is therefore considered to be a ‘symbolic implementation’ (Matland, 1995), featuring high levels of ambiguity and conflict. The route out of this situation is for the centre to clearly assess the relative coalitional strengths
of different groups in the sector, and allocate resources and provide incentives in such a way as to shift power imbalances, so that the desired outcome can be achieved. This will require proactive and bold initiatives from the centre, which participants did
not perceive had been forthcoming.
Dave Parry
HOD CS @ AUT
Exec Director KEDRI
Here is Samantha Fitch’s thesis. https://researchspace.auckland.ac.nz/handle/2292/33558#.XjjfXcl725U.email
“Trust, Information-Sharing and the Doctor–Patient Relationship: A Multi-Method, Empirical-Ethics Study of New Zealand General Practice”
Information-sharing in health care presents opportunities for efficient and effective patient care based on the exchange of high quality information, improved decision making, and increased collaboration and coordination of care across the system. However, it also presents concerns around the control of information and maintaining trust in the privacy, confidentiality and security of information. These concerns reflect the difficulty in balancing how to share information in ways that protect the interests of the individual and any overriding interests of the public. This thesis reports on research exploring trust and information-sharing between patients and General Practitioners (GPs) in New Zealand using a multi-method, empirical-ethics approach. This combines a critical realist theoretical perspective with critical applied ethics. The findings from two empirical studies outline expectations that GPs ensure patient privacy and confidentiality, only sharing information as necessary or appropriate. While levels of trust in health professionals and organisations are high, patient knowledge and awareness of the rules and practices around information-sharing are low. Further these matters are not often discussed between GPs and patients, and patients are not concerned by this. Patients showed little concern about information being shared within the health system or with health professionals, but had concerns about the potential implications of third-party sharing. While some actions may disrupt or breach trust there are ways that GPs can seek to rebuild trust with patients. The findings con rm the importance of trust for the GP{patient relationship and suggests that patients’ trust GPs to use and share information when necessary and for their benefit. In an ethical analysis based on Beauchamp and Childress’ four principles, this thesis suggests that trust is best conceived as a foundational aspect of what it is to interact with patients in a way that fulfils GPs’ obligations. This thesis suggests that an orientation towards building and maintaining trusting GP{patient relationships provides a more robust and relationally focused way of balancing conflicting ethical obligations as exist around information-sharing.
thanks Karen.
Cheers M