A total of 80 surveys were submitted of which 72 were completed. Sixty-six percent of GPs that completed a survey were over the age of 40 and of these, 54% identified as actively practicing medicine between 11-30 years. Characteristics of the participants are available in Table 1. To provide additional context to the survey, 10 practitioners were interviewed of which 8 identified as either being part owner or sole proprietor of their practices.
Table 1
Interview Participant Characteristics
Characteristic | Surveys N (%) Total = 72 | Interview N (%) Total = 10 |
Age Group (Years) | | |
<40 | 24 (33.3%) | 1 (10.0%) |
40-55 | 19 (26.6%) | 4 (40.0%) |
>55 | 29 (40.2%) | 5 (50.0%) |
Years Practicing | | |
0-10 | 35 (48.6%) | 4 (40.0%) |
11-30 | 26 (36.1%) | 5 (50.0%) |
>31 | 11 (15.2%) | 1 (10.0%) |
Practice Size | | |
Solo | 2 (2.7%) | - |
2-5 GPs | 9 (12.5%) | 1 (10.0%) |
6+ GPs | 61 (84.7%) | 9 (90.0%) |
Location (PHN) | | |
Perth North [Urban] | 32 (44.4%) | 4 (40.0%) |
Perth South [Urban] | 22 (30.6%) | 4 (40.0%) |
Country WA [Rural and Remote]* | 4 (5.6%) | 2 (20.0%) |
Not Disclosed | 14 (19%) | - |
*As defined by the Modified Mixed Monash model (22) |
The survey and interview responses were collected across six themed sections to gather information on the practitioner’s experience and willingness to participate in research, their understanding of the data sharing requirements and the concerns that they had.
Previous Participation in Research
A majority of those surveyed (76%) had participated in research on more than one occasion, with ninety-five percent of practitioners stating research to be either important (25%) or very important (70%) to Australia’s future. Given the opportunity of participating in future research projects, 67% of participants considered it very likely (39%) or likely (28%) of being involved, with 30% feeling uncertain.
When specifically asked about sharing data for research purposes the majority of practitioners interviewed (N=6, 60%) indicated that a lack of knowledge about research requirements as a barrier, with one practitioner stating:
“It’s not that we’re not interested or don’t want to be involved in research, it’s just that we’ve never done it and don’t know where to start. G1”.
Another highlighted regulations imposed within the health system as being the main impediment to sharing data for broader consideration:
The system is more regulated than it used to be, to the point that it is ridiculous how careful we have to be. I suppose it’s this that prevents us from sharing data outright. Even though the technology makes it easier to share data the bureaucracy and the amount of associated regulation is slowing things down. B1
When asked what factors would prohibit participation in research projects, respondents identified time required to thoroughly understanding the purpose of request and obtaining consent as the main challenges.
Practice owners (N=8, 80%) who had been asked to participate in previous data sharing projects were expected to expertly review each request and familiarise themselves with all aspects of the project. This includes understanding and agreeing to the purpose of the data request; assessment of clinical and legal risks to both the patient and the practice; impact to the business associated with the time required to collect, prepare and securely transfer the data; ascertain the liability, accountability and extent of coverage specified in the related data sharing agreement; as well as placing trust in the organisation requesting the data.
…most of the time we don’t have a good understanding of what the data is being collected for and the data has the potential to be used out of context and even though it may be telling you something it may not be representative of what is actually happening in the practice. To get to that level of understanding I would need to put in dedicated amount of time to match my level of understanding to what is being asked for. It’s a fear of not knowing. Sometimes you just have to blindly trust what they are telling you what the data will be used for. B1
Additionally, these concerns led some practitioners question their role in primary care.
….from a collection stand point … is that going to take away valuable time I have with the patient? Am I now going to be a collector of data rather than a listener of a story to a patient? Will I be taken away from my primary purpose for which I am there? C1
Patient recruitment and obtaining consent requires an investment of valuable time outside the therapeutic relationship between practitioners and their patients.
Consent is cumbersome and time consuming however there is a lot of value in that because you’re building a relationship with the patient. You’re building an understanding of the project and the natural progression from that is whether they’re happy and if all they’re questions have been answered before they consent. G1
Depending on the data request purpose, practices may be required to obtain consent from both patients and the practice GPs, adding an additional level of complexity and time.
My reluctance in going to everybody [in the practice] and getting permission. There is a perception that the data belongs to them [GPs], and that’s a bit of a grey area. Because the data doesn’t belong to them, it belongs to the practice and that could confuse things. E1
Willingness
Willingness to share data for secondary use was ascertained by the practitioner’s perceived risk to their patient, other health providers involved in the patient’s care, or their general practice. The majority of respondents (N=48-58, 67%-81%) felt there was very low or low risk with sharing de-identified patient information with other general practitioners (N=48, 67%) other health providers (N=53, 73%) or with the patient themselves (N=58, 81%). This was supported by the interviewed practitioners all of whom had little concern with sharing de-identified patient information across the health care system:
“Look, we already share quite a bit of patient information – as part of their care plans with other GPs including path labs and radiology clinics…so I’m comfortable with this from that approach. E1”
To be honest, whether I give you the data for research or to the federal government, I’d have the same concerns … what will you be doing with data, what are you going to do with the data, is my data safe, who’s benefitting and how … and can I trust you? H2
When asked to identify the potential consequences to sharing data for secondary use, surveyed practitioners, revealed that litigation (N=19, 27%), misinterpretation of data leading to wrong conclusions for the practitioner (N=14, 20%) and loss of business (N=13, 18%) as the top three concerns. Data breaches (N=11, 15%), information used for outcome payments (N=9, 13%) and wrong conclusions associated with the practice (N=5, 7%) featured less as concerns. Eight survey respondents offered additional consequences which largely reflected their concerns with sharing patient data. These included a lack of clarity with regards to consent (N=2, 2.8%), extra time required in an already busy practice (N=2, 2.8%), data entry errors resulting in unreliable, non-uniform data leading to wrong conclusions (N=3, 4%), and a threat to funding and revenue streams for general practice (N=1, 1%).
Types of data
Depending on the type of data being requested, surveyed practitioners were comfortable in sharing demographic information (N=66, 92%), medical information (N=62, 86%), location information (as postcode) (N=56, 78%), family history (N=50, 69%), hospital information and community care information (N=40, 56%). However, personally identifiable information such as name, birthdate, phone number) was recognised as being sensitive, with high (N=54, 75%) levels of discomfort and concern around secondary research use.
Sharing of non-threatening aggregate data was found to be more acceptable for most of the interviewed practitioners, with many participating in the federal government’s Practice Incentives Program for Quality Improvement (PIP QI), a financially incentivised program supporting quality improvement activities (23, 24). However, some concerns still existed where it is perceived that the data will expose practices business intelligence:
Even if you’re sharing high level aggregate data like number of active patients or number of patients with a chronic disease for example, you are potentially encroaching on the practices business intelligence and may give insights to our competitive edge and could be used in inappropriate ways. After all we’re all in the market competing for the same patients. At the end of day, we are all private business and are operating competitively. E1
I’m happy to share data that’s aggregated and nothing else. We already do this to claim the PIP payment. We reviewed this within the practice and found that it was of low risk to both our patients and the practice … for the moment … because we don’t know what else will it be used for. D1
Data sharing concerns
When asked what would prevent practitioners from sharing their data, data breaches (N=65, 90%), data being used to tie general practice funding to outcome payments (N=51, 71%) and litigation (N=42, 58%) ranked as the three main concerns (Figure 1). Interviews confirmed that trust in an organisation’s ability to collect, store and be responsible for the shared data in a secure manner can influence a practitioner willingness to share their data for research and secondary use (15).
If there is a data breach … is the practice indemnified? If the patient decides to sue, whom could they go after? F1
Data Collection and Storage
Surveyed practitioners were asked about the perceived trustworthiness of Australian organisations collecting various forms of health data. Government agencies were generally perceived as having higher levels of trust. The Royal Australian College of General Practice (RACGP) (N=34 47%), the largest organisation representing general practitioners, was also considered to be a trusted entity for data collection and storage. Universities (N=30, 41%) were perceived as having a moderate level of trust; while corporate organisations (N=66, 91%) such as commercial tracking companies, software companies and extraction vendors were perceived to have the lowest trust.
Sharing data with a university provided reassurances that data would only be used for a specific purpose with no potential of over-reaching or scope creep. This is in part attributed to the ethical guidelines and principles universities are required to follow when working with health-related data. As one practitioner noted:
I’m reassured with university research as I know if the project has ethics approval, it can only be used for a specific purpose and nothing else. I’d be happy for the university to have control of the data from an academic perspective because universities tend to have a lot of respect across the clinical and research community… B1
Understanding
When practitioners were asked about their level of understanding of how shared data would be managed across different organisations, most of the respondents had little to no familiarity with the processes (even though many had a medium to high level perception of trust).
Interview participants noted considerable concerns relating to lack of transparency, autonomy and sovereignty around shared data, including a loss of control over what happens to the data. Relinquishing control of the data places some practices in a vulnerable position with many of them being both cautious and sceptical.
“ Look, we’re a business - just like all the other practices – and we need to take advantage of whatever funding opportunities come our way and you can argue that PIP is one of those opportunities. We wouldn’t share otherwise. We upload our data to the PHN who in turn do who knows what with it… I expect that eventually the data will be used in some way to get more out of us. Without context the data could actually be misrepresenting us and that’s a concern. It would be nice to have more control as we currently don’t really know how are data is being used and for what purpose. D2 ”
I’d like more control over my data…. being able to opt in or out. Ensuring that the data would not be used for punitive purposes…it’s about not knowing what they will be doing with the data in the future. C1
Overall practitioners were ‘fairly confident’ (N=33, 45.3%) in their understanding of their obligations and responsibilities of Australia’s privacy legislation, although there was a reliance on the RACGP to provide them with guidance. A small group of general practitioners (N=11, 15.6%) identified as being extremely confident by having read the legislation and have a complete understanding of their obligations.
I understand the ethical considerations of the Privacy Act. I’ve recently had to revisit this for the eHealth application [My Health Record] that was rolled out recently. Where I have to call my patient in and explain to them and give them an explanation statement. I have to make sure they fully understand why I'm sharing their data with this organisation. A1