Table 3: Descriptive data and major themes of included studies.

Author	Year	Location	Publication Type	Author affiliation, Target audience	Major themes related to HDC
DATABASE SEARCH
Contreras et al.	2018	UK	Letter to editor	Academic, Academia	Who owns the data by law? Will the HDC replace or supplement existing ideas? Third-party, patient-controlled compilations of health data, such as mobile health records already exist – how will they be incorporated into HDC?
Grumbach et al.	2014	USA	Research Article	Academic, Academia	Acquiring an electronic health for a healthcare cooperative will need to create functional patient registries A primary care cooperative extension service would provide technical assistance in the implementation of chronic care models, advanced access scheduling, group medical visits, and similar innovations.
Hafen et al.	2014	Switzerland	Research Article	Academic, Academia/policy	Precision medicine and personalized health are related. already 40000 health related apps that collect patient data and can contribute towards precision medicine. Personal data is a new asset, patients have limited access due to i) decentralized storage, ii) data protection laws
Mahlmann et al.	2018	Switzerland	Research Article	Academic, Academia /policy/Public health workers	New data sources are emerging, such as: lifestyle data, quantified self movement, demographic data etc. The private sector is rapidly adopting data strategies No integration of big data into public health policies Data are not interlinked - inability to realize the potentials of data from apps etc.
Mikk et al.	2017	USA	Commentary	Academic, Academia	Commentary is in response to a comment that individuals who have control over their longitudinal data are less likely to share it. Authors prove that individuals are more likely to share their health data for research as compared to their physicians.
Tracy et al.	2004	Canada	Research Article	Academic, Academia	Most participants possessed extremely limited knowledge of how their public health information is collected, used, and disclosed; They don’t have control over collection, use and disclosure of PHR; scared of privacy; new tool can increase security; have mistrust about the protection about their privacy; HCID would prevent breaches of privacy; Access to medical records is generally considered appropriate after consent has been obtained but there is lack of clarity as to whether express consent is required for each and every use; Individuals want privacy of own data (solved by governance) but public benefit from data (tools needed)
Van Roessel et al.	2018	Switzerland	Research Article	Academic, Academia/policy	HDC is citizen owned, equal property of members; not for profit; revenues will be reinvested; Because of technological advances, the amount of available personal data will expand considerably; The willingness to share personal health information increases when individuals have control over their own data and the information is anonymous
Vayena et al.	2017	Switzerland	Review	Academic, Academia/Policy /Public health workers	Traditional means of control: Data control is conducive to transparency, accountability, and trust which includes informed consent; professional confidentiality; anonymization Emerging models of Control include control over data access, control over data uses, and governance
Montgomery J.	2017	USA	Review	Academic, Academia/Policy /Public health workers	Health information as the private property of patients It is hard to justify on the traditional ‘labour theory’ of ownership. That approach would instead suggest that health information derived from patients should be owned by health professionals (or more plausibly the health systems for whom they work). However, giving either patients or individual professionals the right to extract ransom payments from those seeking to use genomic science to provide personalised medicine enables them to appropriate to themselves material that is biologically common to others.
Blasimme et al.	2018	Netherland	Commentary	Academic, Academia/Policy /Public Health workers	Informed consent; Privacy issues; governance, and readiness
Dorey et al.	2018	Netherland	Research Article	Academic, Academia, Policy, Public Health workers	Qualitative study gain an in-depth understanding of the awareness of possible ethical risks and corresponding obligations among those who are involved in projects using patient data, i.e. healthcare professionals, regulators and policy makers. Interviewees pointed out the risks of collecting the wrong data, or in the wrong way and generating waste; Respondent attitude: a) all interviewees recognized patient rights to know, to protect privacy and to own their data. However, their attitude regarding patient information indicated some discrepancies with this position; b) they recognized that, depending on their purpose, all health stakeholders could benefit from CRGs; d) it was suggested that physicians needed to be better trained in information technologies and public health sciences; e) Most interviewees supported public governance to serve public interest
King et al.	2016	USA	Research Article	Non-academic, policy	Community health record should focus: 1) enable meaningful collaboration, 2) facilitate a shared approach, 3) build workforce and infrastructure capacity, and 4) establish a new way of doing business that enables the transformation of community health data into information and information into knowledge to aid decision makers in collectively improving population health.
Torres et al.	2014	USA	Research Article	Academic, Policy	Health care market characteristics and their impacts on data sharing within and across Communities; Provided strategies that selected communities employed to build and strengthen their data sharing infrastructure. Also provided information on usability and integration of electronic data exchange into workflows
Allen et al.	2014	USA	Case Study	Non-academic, Policy	Can drive improvements in health and health care by increasing the accuracy, accessibility, and utility of patient information
GREY LITERATURE SEARCH
Denise et al.	2012	USA	Policy report	Academic, Policy	This report discusses a common community data set Today, discharge data provides the full community of users with information that is relatively current, has provider identifiers, and is cost efficient. The information is used in public displays, such as websites, dynamic web query systems, and in traditional reports. It provides a broad array of information not found in individual registries and is more cost efficient to collect than other sources. It can also be de-identified to allow broader use, than is possible with other clinical data sources. Because they are widely available and broadly used, hospital discharge data could serve as the backbone for a hybrid EMR/discharge “package” of information. Statewide discharge data combined with clinical data in an EMR can supply both the numerator and denominator for examining outcomes of care and cost effectiveness of treatments. In addition, the common structure and relative uniformity of hospital discharge data across providers and states, allows for regional and national comparisons.
Nadeau, E.G.	2010	USA	Report	Academic, Academia	The key features of national Cooperative business Association in community health mobilization model in western Kenya are summarized. Autonomous and democratically run local organizations. Additional community-based organizations. Local residents form women’s groups, youth groups, HIV-AIDS support groups and other organizations that carry out their own health education, health services, and economic development activities.
Future Care Capital	2017	UK	Company Report	Non-academic, Policy	A growing number of organisations are making progress in integrating health and care record data at the local level, but the complexities surrounding Information Governance (IG) modelling are impacting associated timescales as well as the potential for such data to be put to beneficial secondary uses. The process took those this report interviewed up to twelve months to finalise, and none plans to integrate substantial information from social care home providers at present, which would almost certainly take more time. Only one of the interviewees used the data collected for purposes other than direct care and provided third party access for research based upon informed consent.
Ken, T.	2015	USA	News article	Academic, Academia	Article describes the struggle in the ownership of patient medical data Themes are presented about data ownership and how medical practices can be adjusted to meet ownership laws.

Website Name, URL	Location	Purpose of Website	Private or Academic	Themes
INTERNET SEARCH
A healthcare Startup to provide patient perspective adopts co-op model, https://medcitynews.com/2018/04/healthcare-startup-provide-patient-perspective-adopts-co-op-model/	Europe	News	Private	From the perspective of Savvy Cooperative CEO and founder Jen Horonjeff, if pharma companies, healthcare organizations, and technology companies want a patient’s perspective to create better treatments and solutions, then they should pay patients, not just the company providing access. Savvy Cooperative is set up as a patient co-operative.
Are digital data co-ops an alternative to the commercialisation of health? https://thisisnotasociology.blog/2017/02/27/are-digital-data-co-ops-an-alternative-to-the-commercialisation-of-health	USA	Blog	Private	The Coop will mostly generate funding through fees paid for access to the data by researchers or companies with profits reinvested in the organisation (there will not be shareholders). Individuals will be able to refuse access to their data to particular organizations or companies and the membership will be able to vote on who is accepted as a client.
Data Cooperatives - P2P Foundation, http://wiki.p2pfoundation.net/Data_Cooperatives	Europe	Research	Academic	You manage the key to your data. The cooperative will take care of the collective utilization of that data for you in the interest of you. The proceeds will be reinvested in a new health economy: an economy that has an interest in your health instead of your illness
Holland Health Data Cooperative | LinkedIn, https://www.linkedin.com/company/holland-health-data-cooperativ	Europe	Corporate	Private	The diversity of personal health record Platforms (PHR) includes: Business driven initiatives from the IT giants, sensor driven initiatives. Access through web and mobile apps (mHealth), data visualization (timelines, graphs, calendar views, ...), data-sharing with friends, health professionals, coaches
Swiss Data alliance, https://swiss-data-alliance.squarespace.com	Europe	Presentation		The diversity of personal health record Platforms (PHR) includes: Business driven initiatives from the IT giants, sensor driven initiatives. Access through web and mobile apps (mHealth), data visualization (timelines, graphs, calendar views, ...), data-sharing with friends, health professionals, coaches
MIDATA.COOPs – Personal (Health) Data Cooperatives, https://www.midata.coop/	Europe	Corporate	Private	MIDATA outlines the Primary and Secondary Use of Data Primary use # E.g. Patient – physician interaction # E.g. Citizen – commercial provider (according to digital agreements with App providers and retail companies (e.g. Micros Cumulus) Secondary use # Value generated through aggregation (e.g. advertising, clinical research, public health) # $ 1 Bn personal data economy (health data not included) builds on secondary use # Currently citizens have not control and little benefit from secondary use
Patient Ownership creating the business Environment http://www.ourhdc.com/files/77395669.pdf	USA	Corporate	Private	The current siloed structure of US health data repositories requires researchers to access a variety of proprietary databases, controlled by individual healthcare systems providers or to request access to health providers' patients for randomized double-blind samples.
The future of your health data, http://maneeshjuneja.com/blog/2014/2/12/the-future-of-your-health-data	USA	Blog	Private	Our Health Data Co-Operative is in the US and has recently been recognised by the White House as playing a role in promoting "Data to Knowledge to Action". The founder, Patrick Grant, states, "Our Health Data Cooperative is built on the premise that Patients should benefit economically from access by third parties to their health information." HealthBank: A patient data co-operative based in Switzerland but aiming to build a global secure depository for patient data. Their website talks of patients having "a HealthBank account, to store, access, manage and share their health data. And users can earn financial and other returns on their health data, similar to receiving returns from a bank account."
The Personal Data Economy – A Cooperative Approach - Inspire2Live, http://inspire2live.org/wp-content/uploads/10.-Ernst-Hafen-Personal-Data-Economy-a-cooperative-approach.pdf	Europe	Research	Academic	The Challenge: Rebalancing the socioeconomic asymmetry in a data-driven economy.
This co-op lets patients monetize their own health data - Fast Company, https://www.fastcompany.com/90207550/this-co-op-lets-patients-monetize-their-own-health-data	USA	News	Private	In 2016, Horonjeff, along with her co-founder Ronnie Sharpe, who grew up with cystic fibrosis and founded a social network for others with the diseases, started Savvy, a platform to bridge the gap between patients and practitioners. The platform officially launched in the fall of 2017, and recently became a public benefit corporation.
Towards a European Ecosystem for Healthcare Data – Digital, https://digitalenlightenment.org/system/files/def_healthcare_data_management_report_oct2017_v3.5.pdf	Europe	Research	Academic	The Data Commons Co-op greases the flow of data between communities in the cooperative, solidarity, new, call-it-what-you-will economy. The co-op not only serves these communities, it is owned by them.
Data Commons Cooperative, https://datacommons.coop/	Australia	Corporate	Private	The Data Commons Co-op greases the flow of data between communities in the cooperative, solidarity, new, call-it-what-you-will economy. The co-op not only serves these communities, it is owned by them.
Digital Health CRC – Home, https://www.digitalhealthcrc.com/	USA	Corporate	Private	This corporation is developing a unique, multidisciplinary, collaborative taskforce of research, clinical, industry, government and educational organizations to focus research and development on combining individual and collective expertise with data, information and telecommunication technologies. Company themes: Empowering consumers, improving understanding of health risks in individuals and communities, supporting clinical practice, improving system efficiency by joining up data, improving access to quality care The desired outcomes Our collaborative approach will: improve the health and wellbeing of hundreds of thousands of Australians, improve value of care, create a new digital workforce through at least 1000 new jobs in digital health and related industries.