Personal data charter

Alex Green

What is a Personal Data Charter?

The PDC sets out the standards that service users can expect when accessing the range of services provided by voluntary organisations; delineates the rationale behind the collection of sensitive information; and breaks down the data lifecycle. Crucially, it also informs service users of their rights by providing clarity on who the data controller and processors are, existing data sharing agreements and parties involved, and by listing the resources and help available for service users to recur to, should the need arise.

Implications for Service Users

Information on why and what personal information is collected, how this is processed and protected can be very scattered and hard to access or navigate, particularly for people relying on the support provided by charitable organisations. The clarity and depth of information may also vary depending on how services are delivered, especially when multiple agencies are simultaneously working on the same case.

In addition, fundamental rights concerning how personal data can be amended, disclosed or destroyed are not clearly stated or sufficiently emphasised when beneficiaries access the services they need; these rather tend to be relegated to policies, terms and conditions that are can be disjointed and stated in different places simultaneously (e.g. website, forms, resource hubs, and so forth). Services users should not navigate through different documents and online resources to understand what their rights are and, quite importantly, why data collection is essential for the delivery of the service(s) they need.

Service users should be provided with the means to understand their rights and how these can be exercised at any time, as well as with the means to easily identify the key individuals within the service provider(s) who are responsible for handling data-related enquiries.

Implications for Service Providers

The PDC has the potential to serve as a useful tool for voluntary organisations to state clearly and concisely not just why they need to collect personal information, but what they are going to do with it and how data collection and processing align with their mission and values, as well as with the latest GDPR regulations.

There is currently a lack of clarity and standards on what data could and should be collected and shared between funders and grantees. This is not always clearly stated upfront, and some grant recipients are unclear on what the best course of actions may entangle when funders ask grantees to share information concerning their service users.

The adoption of a PDC comes with opportunities

For more data to be shared purposefully and proportionally across charitable organisations; for statutory and voluntary institutions to adopt and divulge a shared set of principles and good practice; for service users to be in full control of their personal information and how it is used; for the society to benefit from the responsible use of data and knowledge that this can unlock; for the sector to champion transparency, fairness and accountability; for multi-agency parentships and referral agencies to be able to collaborate on the basis of a clear and unequivocal set of standards and regulations.

Why NPC

We believe we are well placed to interrogate the sector to understand how much it is known about personal data charters, what is the actual level of need for this, and whether a standardised vs customised approach would be a better fit for the purposes outlined here. We believe this represent an exciting opportunity for the voluntary sector to venture into some of the uncharted territories emerged as result of the data revolution and newly implemented personal information regulations.

We have extensive record of supporting and connecting the sector: funders with charities; beneficiaries with service providers; governments and voluntary sector; and we are independent. Furthermore, our new strategy and approach will be focusing even more on people, places, the role of data, digital and systems change. The PDC is very much aligned with our current and new objectives of improving the sector’s ability to maximise impact, provide more effective and lasting support to the people who engage in their services as well as to enable beneficiaries to be both agent and recipients of positive, long-lasting change. The latter can’t happen without service users being fully and clearly informed of their rights and the role that data plays in both service and impact implementation, as we believe service users shouldn’t simply be recipient of change, but rather actors of change who are directly involved in implementing current and new services provision.

We don’t simply aim to create a product, the use of which we can promote and disseminate. We aim to consult the sector, both providers and users, to ensure that the PDC is reflective of current needs and applicable to different agencies and contexts. To achieve this, we will be consulting different groups of individuals with the relevant skills and experience. The result of the consultation will be helping us finding areas of improvements or that we have yet to address, as well as to underpin the mechanisms necessary to ensure the necessary changes for the PDC to become widely adopted and used.

 

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