The Promise of Data - Day Four - Ownership and Possession of Data

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The Promise of Data - Day Four - Ownership and Possession of Data

Whose data is it anyway? Plus sharing ideas at the “Knowledge Café” and a Skype call from the Minister for Health of Rwanda Dr Agnes Binagwaho, the Rwandan Minister for Health, joins the session via video link

Throughout the week in Salzburg, the issue of data privacy and ownership has been brought up repeatedly. The fourth day of The Promise of Data: Will this Bring a Revolution in Health Care Fellows finally tackled this topic head on.

With expert legal input, Fellows compared different attitudes and policies in place in their respective countries and whether a globalized approach to data ownership and sharing should be pursued.

Data ownership is a complex legal issue because data exists in so many places. Data on a patient’s drug prescription for example resides with the patient, the doctor, the pharmacy, the health insurers, and possibly others. Who owns this data? Anyone? Everyone? No one? 

Possession of data, rather than ownership, could be more important, one Fellow pointed.

Patients in possession, even in copy, of their own health records and data (self-recorded or otherwise) are in a position to make more informed decisions about their care. Better self-care could ultimately reduce the burden on health systems and improve public health at large.

Given the positive impact big data can have on public health, should health data be considered a public good? If so, how can we enable easier sharing of this data? In many countries, patients currently have to give consent for each different usage of their data, and countries like Italy  do not allow doctors and researchers to use the same data for multiple studies. Could Sweden’s “personal health accounts” through which patients can “donate” their data be a model to follow? 

How can we encourage or even force private companies to share their data? Many companies use the “excuse” that they refuse to share data because of patients’ privacy concerns when the “real reason” is fear of losing commercial advantages.

How can we ensure that all this data will only be used for the public good? As one Fellow pointed out: “There are probably good uses we can all agree on and bad uses we all want to avoid, but there’s an awful lot in the mushy middle.”

Sharing ideas at the “Knowledge Café”

Wednesday began with a “knowledge café” in Parker Hall, where participants rotated between five discussion groups led by an expert in a designated field.

Rebecca Emeny of the Munich Cancer Registry (MCR) led a group discussion asking how big data in cancer registries can improve global health care. Examples of how cancer registries can inform, enforce and change guidelines were presented. 

The MCR coordinates a complex health system to react to innovative therapies that require interdisciplinary action involving various specialties (e.g. urologists, radiation therapists and oncologists). 

One participant asked how knowledge of new therapeutic options can be optimally transferred into clinical practice while avoiding corruption. The MCR provides such a self-regulatory mechanism by allowing each clinic and each clinician, under password access to portions of the MCR website, to compare their individual performance against all others in the registry catchment area. 

Several participants acknowledged the limitations caused by a lack of personal identifiers to track patients from one clinic to the next; a problem for registries that is as real in Rwanda as it is in the USA.

Another group led by Leo Ryan, director of ICF International’s International Health and Development (IHD) Division, focused on the possibilities and limits of utilizing population-based data to inform decision-making in lower and middle income countries. Points raised included the importance of having strong national health management information systems to complement periodic national surveys; the challenges of fragmented health systems; the benefits and potential pitfalls of aggregating multiple data sets into a single index and making it openly accessible.

Shahid Hanif of the Association of the British Pharmaceutical Industry discussed the putting patients at the heart of managing their health care data, particularly as patients, physicians and researchers are beginning to see the value of data/information provided by patients to augment their electronic health record data. Participants agreed that patient platforms do have the power to transform health care and research, but they need to be accessible, validated and of value to transform patient engagement in the provision of health care and patient participation in research.

Felix Chang, chief strategy officer of predictive analytics company DecisionQ, examined Big Data’s “So What”, and how to deploy it faster to create actionable predictive analytics in health care. One participant suggested that DecisionQ could focus its analytic efforts on identifying data elements that could lead to even more predictive models, but are currently missing. That would help medical researchers and practitioners accelerate their work.

Harri Honko of the Digital Health Revolution Program presented MyData, a strategic Digital Health initiative and research program aimed to change Finnish health care around moving, citizen-managed data. Some participants raised devil’s advocate questions about having patients manage their own data. Would driving personal data control into the hands of individuals be doable without having large regulatory changes? Are we assuming individuals would really be actively managing use of their data, and what would the incentive be to take so much control (and work) onto their own shoulders?’

A call from the Minister

Agnes Binagwaho, Minister of Health for Rwanda, took time out of her busy travel schedule to join the session via Skype. 

Several participants expressed how valuable it was to be able to ask the minister about points raised in her pre-recorded video message shown on Tuesday.

The Rwandan Ministry of Health is also represented in person by Andrew Muhire, who has also been providing examples of Rwanda’s approach to health care data throughout the session.

Many participants were especially struck by Rwanda’s use of rapid SMS messaging, widespread in much of Africa, to power efficient health care on a limited budget. SMS technology allows the ministry to pass vital messages to 45,000 community health care workers across the country in less than an hour.

When an ambulance is requested, an SMS is sent to the relevant district and also to the ministry, where officials can check if the ambulance attended the incident. 

This enabled Rwanda to become the first country to contain a cholera outbreak at fewer than 15 cases.

A participant from an EU member state remarked that their country had a lot to learn from Rwanda’s integrated approach to data, where electronic systems keep data management to a minimum, thus allowing health workers to send more time with patients.

In the concluding remarks from another participant: “When you don’t have data, you don’t manage, and when you don’t manage, you just hope you do the right thing.”

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To read and join in with all the discussions in Salzburg, follow the hashtag #SGShealth on TwitterFacebook and Instagram. The session The Promise of Data: Will This Bring a Revolution in Health Care? Is part of the Salzburg Global series “Health and Health Care Innovation in the 21st Century” and is being held in collaboration with the Mayo ClinicArizona State UniversityThe Dartmouth Center for Health Care Delivery Science, and in association with the Karolinska Insititutet.

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