Consumer data is increasingly being collected, linked and used, both with and without their knowledge and informed consent. There is increasing discussion about the ‘big data’ agenda, evidence-informed policy, and a growing premium being placed on the importance of data-driven service development and improvement.    

While the discussion of the benefits to be realised by collecting data and using it more effectively will continue, little attention has been paid to how consumers feel about this new data era and their perspectives on data access and secondary use. This is an omission that needs to be rectified to better inform how the national discussion progresses further.

The Department of Health (Health) has contracted CHF to look at three issues at the intersection of data and healthcare: Stage 1 was to look at patient’s ability to access their own medical record; Stage 2 was to investigate patient’s consent to share their de-identified health data for secondary uses; and Stage 3 was to work on Patient -Reported Experience Measures (PREMS) and Patient Reported Outcome Measures (PROMS). Together these made up the Patient Access, Consent and Outcome Measure (PACOM) project. 

As the Project developed it was decided to combine Stage 1 and Stage 2 given the large degree of overlap of the activities for the two stages. In addition, Stage 3 was significantly rescoped to focus on Clinical Quality Registries as overlaps between Stage 3 and the Department's commitment to the OECD PaRIS Project made the original purpose of Stage 3 redundant.

STAGE 1+2: Access to Consumer Medical Records and Health Data

This stage of the PACOM Project consists of two key activities. The first is a series of in-depth qualitative interviews with consumers about their own experience attempting to access their medical records and their perspectives on consenting to share their health data for secondary use. These interviews happened in July and August 2020. 

The second activity will be a nationally representative survey with a target of 2000 participants that will be run through the Dynata market research company in conjunction with analysts Urbis. It is expected this survey will be run over the Summer of 2020/2021.

STAGE 3: National Clinical Quality Registry and Virtual Registry Strategy 2020-30 Consumer Resource

This stage of the PACOM Project consisted of one key activity- the creation of a consumer-targeted resource around Clinical Quality Registries (CQRs) and the Department of Health's National Clinical Quality Registry and Virtual Registry Strategy 2020-30. This will include the creation of a Consumer Working Group to develop and iterate the consumer resource from January 2021 until May 2021.