Executive summary
Consumer health data – clinical and socio-demographic – is increasingly collected, linked and used, both with and without consumers’ knowledge and informed consent. There is increasing focus on ‘big data’, evidence-informed policy, and the value of data-driven service development and improvement. Recent examples of this include consultations about the secondary use of health data, incentivising the capture of data at the point of care delivery, and the My Health Record.

While discussions will continue on the benefits to be realised by collecting data and using it more effectively, limited attention has been paid to how consumers feel about this new data era and to assessing their data literacy.

In 2017, NPS MedicineWise collaborated with the Consumers Health Forum of Australia (CHF) on a research project about consumers’ attitudes to data. The four phases of the project were: a literature review; exploratory interviews with consumers; a survey with a nationally representative sample of consumers; and a jointly hosted thought leadership roundtable bringing together representatives from key organisations involved in digital health and use of data, consumer organisations, and consumers involved in the research.

Key themes to emerge from the research and roundtable were as follows:

1. Consumers want ownership of and control over their own health data
In addition to ownership and control of their own health data, consumers want access to their health data to be granted to themselves, health professionals and people who care about or for them.

The research found that consumers are in favour of explicitly giving consent to the sharing and use of their health data. Consumers want control over which organisations have access to their data for secondary purposes (eg research). These findings are indicative of support for the roll out of electronic health records, and for these records to be controlled by consumers themselves.

Consumers want to be asked for consent when organisations want access to their health data. Developing models of consent that are both acceptable to consumers and feasible for research and health communities should be considered a key challenge and priority. Roundtable participants were clear that consent processes need to be consumer-centric, informed by consumers and should increase commensurate with the risk of identification. Consumer involvement in consent design is crucial to ensuring that consent is meaningful and not a barrier to participation or simply a 'tick the box' exercise.

2. Consumers are highly segmented and not a homogeneous group. Involving consumers is key to building trust and willingness to share their data for benefits realisation
Consumers are more willing to share data when it is for public or individual good, and are significantly less likely to share it if it is to be used for commercial gain. The research found that where consumers have a better understanding of what their data is going to be used for and that there are benefits in doing so, they are more likely to share it.

One key insight from the roundtable was that consumers were more likely to accept the sharing of their health data if there is an element of a quid pro quo; their data in exchange for outputs that are meaningful, useful and of value to them as consumers, and that enable them to hold data custodians/users (eg healthcare providers) to account. The roundtable participants commented that secondary data use tends to be driven by what matters to providers rather than recipients of care, and this non-consumer-centric view could be problematic to gaining consumer trust and willingness to share their data. To redress this, consumers need to be involved in defining what outputs they would like to see from use of their data and how they would like to be kept informed about the use of their data.

An important element of this – and a key reason that they should be involved – is that consumers are not and should not be considered a homogeneous group. The research found that there are specific population subgroups with different needs or concerns that should be explicitly dealt with, requiring appropriate consultation, communication and involvement. These include Aboriginal and Torres Strait Islander consumers, particular cultural groups, consumers who have previous experiences that may impact on their levels of trust, and those who are concerned about discrimination due to their health or other circumstances.

3. A high level of transparency on the part of data custodians and data users is required
Consumers value having an understanding of the purposes to which their data is to be put, who is requesting it and how it will be used. The research highlighted that there are varying levels of comfort and understanding among consumers around the use of health data. The challenge identified by roundtable participants is ensuring that clear, concise, relevant and helpful information is used to inform that understanding of the purposes to which the data is being used; complex concepts should be explained simply.

Data linkage is an ill-understood area that requires further clarification and explanation to consumers; as do its benefits. There is also a lack of understanding about ‘de-identification’ and questions have been raised as to the legitimacy and accuracy of this term.

The onus is on organisations that wish to use consumers’ data to put in place clear, transparent, open and two-way communications about the purpose for which the data is to be used, how and by whom it will be used, and the benefits and risks. Again, involving consumers in designing these communications will ensure they meet consumers’ needs, building their trust and willingness to share data.

4. Clear principles to guide data owners
The concept of social licence is an important one and data custodians must ensure they understand and take their responsibilities for appropriate governance and data use seriously. To build consumers’ trust, they must be clear and transparent in communicating those responsibilities and how they fulfil them.

Participants in the roundtable and consumers in the research identified that addressing and taking account of issues of data completeness and quality is critical when linking and drawing insights from health data and in the provision of safe, high quality care. The obligation for this should be on data custodians to ensure that appropriate safeguards exist.

To support data custodians in fulfilling their obligations, clear principles are needed to guide data ownership and use. A whole of government and whole of sector approach to using health data was identified by roundtable participants as key to increasing the consistency, quality and value of data collection, use and linkage. Involving consumers in designing that approach is essential to building trust and encouraging data sharing to derive individual and population health benefits.

As an outcome of the research and the roundtable, NPS MedicineWise and CHF will further explore what is practical in this space and find effective ways to work with consumers and all organisations involved to define best practice approaches and guiding principles for collection, use and sharing of health data.

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