Healthcare data and data protection in the time of coronavirus – Olivia Wint

The processing of special category personal data (including health data e.g. vaccination status, blood type, health conditions etc) was a common topic before the COVID-19 pandemic (the “pandemic”), with various resources published that explored this topic.

For example, the European Data Protection Board (“EDPB”) published an adopted opinion on the interplay between the Clinical Trials Regulation and the General Data Protection Regulation* (“GDPR”) (23January 2019), the Information Commissioner’s Office (“ICO”) posted a blog on why special category personal data needs to be handled even more carefully (14 November 2019) and the ICO published guidance on the lawful basis for processing special category data compliance with the GDPR (November 2019).

The pandemic has brought about a number of data protection considerations, all of which were already in existence but exacerbated by the pandemic (employee monitoring, contact tracing, workforce shift from office to home etc.) One that is more prevalent than ever before is the processing of health data, this piece aims to cover some key data protection themes and practical insights into the processing of health data.  

Health data, a subset of special category personal data by its very nature comes with an increased risk profile.  When processing this data type, not only are there legislative data protection requirements, the expectation of good clinical governance practices but also regulatory body considerations too.                                                           

For example, the NHS Care Quality Commission have in place a code of practice on confidential personal information, the NHS Health Research Authority have in place GDPR guidance specifically for researchers and study coordinators and technical guidance for those responsible for information governance within their organisation and the NHS more generally, has in place it’s Data Security and Protection Toolkit (the “Toolkit”). The Toolkit is an online self-assessment tool that enables organisations to measure and publish their performance against the National Data Guardian’s ten data security standards. The Toolkit covers records management and retention, training and awareness, system vulnerability management and crisis management to name a few.                                                                  

The above is all on a national level (UK), on an international level, there are data protection laws which specifically cover health data such as HIPAA in the US, the Patient Data Protection Act in Germany, and various provincial health data privacy laws in Canada such as the Health Information Act in Alberta.

Whilst the previous paragraph highlights the complexities of processing health data whether on a national and international level in comparison to other data types, there are a number of mitigations that organisations can put in place to adequately reduce the risks associated with processing this type of data. Mitigations such as Data Protection Impact Assessments (“DPIAs”), updated privacy notices and appropriate security measures amongst other things should all be considered.

Many organisations that never historically processed health data may now do so as a result of the pandemic…

Covering your bases

The first base that must be covered when processing data is ensuring that an appropriate legal basis has been established for each data processing activity, so for example if health data is processed for employee monitoring and research, a legal basis for both of these activities will need to be established. Legal bases can include for the performance of a contract, for legitimate interests** of the organisation and/or in order to perform a legal obligation.  Where processing of health data is concerned an additional category under Article 9 of the UK GDPR must be met. In the healthcare context, applicable additional categories may include explicit consent, health or social care purposes, public health purposes and/or archiving research and statistical purposes. 

Many organisations that never historically processed health data may now do as a result of the pandemic or alternatively organisations that processed health data pre-pandemic may now be doing so in larger amounts, organisations that fit either side of the coin should also assess the extent to which their privacy notice(s) have been updated and/or need to be updated in order to make data subjects aware any applicable data processing changes and to comply with transparency obligations.

Next, large scale processing of health data may pose a ‘high risk to the rights and freedoms of natural persons’ and in such cases, will trigger the requirement of a DPIA. In order for a DPIA to have value, it is important for organisations to ensure that the DPIA is assessed and considered early on to ensure privacy by design and default is incumbent of any system or processing activity.

A DPIA will assess the likelihood and severity of harm related to the processing activity in question and should the DPIA identify a high risk with no available mitigations, consultation with the ICO will be needed. The ICO has set out a 9-step lifecycle for the DPIA, all of which should be considered before any data processing has taken place:

  1. Identify a need for a DPIA;
  2. Describe the processing;
  3. Consider consultation;
  4. Assess necessity and proportionality;
  5. Identify and assess risks;
  6. Identify measures to mitigate risk;
  7. Sign off and record outcomes;
  8. Integrate outcomes into plan; and
  9. Keep under review.

Internally, organisations should have appropriate technical and organisational measures in place which reflects the risk presented. In relation to technical measures, appropriate internal controls and security measures should be utilised. Organisations may wish to consider a myriad and combination of controls to ensure that health data has the best level of protection, this may include end to end encryption for data both in transit and at rest, role-based access within organisations and the adoption and accreditation of industry recognised security standards such as ISO 27001.

In respect of organisational measures, it may be apt for training and awareness sessions to be implemented with tailored training administered to employees that will doing data processing activities and a robust policy suite in place which covers key circumstances such as data breaches and business continuity.

Data sharing

A specific data processing activity that may be utilised more in the wake of the pandemic is that of data sharing between organisations for information and research purposes. In the England, the soon to be implemented GP Data Sharing Scheme aims to improve and create a new framework for creating a central NHS digital database from GP records and the UK’s Department of Health and Social Care (“DHSC”) has recently published a draft policy paper titled ‘Data saves lives: reshaping health and social care with data’. The policy covers the aspiration of the DHSC to introduce new legislation as part of the Health and Care Bill (currently at Committee stage) to encourage data sharing between private health providers and the NHS and have more guard rails around the sharing of data generally through mandating standards for how data is collected and stored.

With data sharing as evidenced by the above, is something that will be advocated for and welcomed in due course, it is important that organisations have in place the appropriate contractual and practical measures to protect data as data in motion is when it is most vulnerable. Contractual measures include ensuring data sharing and/or transfer agreements are in place which cover all necessary contractual provisions and provide adequate assurances as to the data sharing/transfer arrangements. The NHSX has published a template Data Sharing Agreement which has been labelled as suitable for use by all health and care organisations and includes risk management, legal basis and confidentiality and privacy provisions amongst other things. Practical measures include conducting due diligence checks on all organisations which may be in receipt of data as part of the data sharing process (including third parties) and anonymising/ pseudonymising data. The ICO has put in place a comprehensive data sharing checklist which invites organisations to consider data minimisation, accountability and data subject rights.

The pandemic has changed the world that we knew it in more ways than one and in the context of processing of health data, what seems to be certain is that the processing of health data is on the rise. As such, organisations should continue to monitor guidance and developments in this area and ensure data protection principles are at the core of all data processing activities as a first port of call.

* EDPB guidelines are no longer directly relevant to the UK data protection regime and are not binding under the UK regime.

** A legitimate interest assessment should be considered when relying on legitimate interest as a lawful basis.

Olivia Wint is a seasoned data protection professional, with over five years experience in this area. Olivia has worked in a range of sectors including local authority, third sector, start-ups and the Big 4 advising on all aspects of data protection compliance.

Big Brother Watch publishes The State of Free Speech Online Report

Government surveillance interest group Big Brother Watch has released an insightful Report entitled: The State of Free Speech Online.

The Report looks at crucial provisions of the English Government’s proposed Online Safety Bill, critiquing its impact on freedom of speech.

The Report in particular focuses on social media platforms and the impact of the Bills provisions on their ability to facilitate free speech.

TPP supports free speech unequivocally, recognising that in a democratic society both rights of free speech and the protection of ones private life must be carefully balanced and safeguarded.

The recent move of Facebook in removing the publication of third parties Australian news from its site in protest to the provisions of the proposed News Media Bargaining Code, in doing so lobbying the Australian government, serves to highlight the unequal bargaining position of online platforms and their extensive influence.  

Furthermore, Twitter permanently suspending then US President Donald Trump highlighted the ability of a platform to  operate at the highest levels as arbiters of free speech.

It serves to bring into sharp relief the need for proper safeguards and guidelines of, as the Report states, private companies who “wield power… comparable to that of governments”.

As arbiters of free speech companies such as Facebook, Instagram, YouTube and Twitter hold substantive sway over millions of conversations where the rights of free speech and those of privacy intersect. This Report is a welcome examination of the coming reforms in the Online Safety Bill through a lens of safeguarding free speech.

It argues that enforcement of free speech rights have been “questionable, inconsistent and problematic” across the platforms. It goes on to opine that such platforms need to mirror the rule of law and reflect human rights principles.

As English law moves to take the next step in regulating the activities of those online via the Online Safety Bill TPP with be reporting focusing on both sides of the free speech and privacy debate.

Cricketer Ben Stokes and mother Deborah Stokes achieve settlement in privacy case against the Sun newspaper, securing rare unreserved apology

Following the publication of an article in 2019 in the Sun newspaper concerning a family matter before the cricketer was born, Ben Stokes and his mother have achieved a settlement from the Sun newspaper.

Mother of Ben Stokes, Deborah Stokes commented: “The decision to publish this article was a decision to expose, and to profit from exposing, intensely private and painful matters within our family. The suffering caused to our family by the publication of this article is something we cannot forgive.

“Ben and I can take no pleasure in concluding this settlement with the Sun. We can only hope that our actions in holding the paper to account will leave a lasting mark, and one that will contribute to prevent other families from having to suffer the same pain as was inflicted on our family by this article.”

The family were represented by Brabners LLP. Paul Lunt, solicitor to Ben and Deborah Stokes and Head of Litigation, said “The Sun has apologised to Ben and Deborah. The paper has accepted that the article ought never to have seen the light of day. The apology to our clients acknowledges the great distress caused to Ben, Deborah and their family by what was a gross intrusion – and exploitation – of their privacy. Substantial damages have also been paid, as well as payment of legal costs.”

See the Brabners LLP press release here.

The Sun stated: “On 17 September 2019 we published a story titled ‘Tragedy that Haunts Stokes’ Family’ which described a tragic incident that had occurred to Deborah Stokes, the mother of Ben Stokes, in New Zealand in 1988. The article caused great distress to the Stokes family, and especially to Deborah Stokes. We should not have published the article. We apologise to Deborah and Ben Stokes. We have agreed to pay them damages and their legal costs.”

Coverage of the settlement can be found in the Guardian, Press Gazette and BBC Sport, amongst others.

An Introduction to English laws tackling revenge pornography – Colette Allen

As the UK moved online in response to the COVID-19 pandemic, reports of image-based abuse – ‘revenge porn’ – doubled. One reason for the increase is that the national lockdown pushed dating lives online, and the sharing of sexual images became one of the few ways to show intimacy. Disclosing, or threatening to disclose, intimate images has a massive psychological toll on victims, and is therefore an effective means of exerting control. Financial pressure, a surge in domestic violence, and relationship breakdowns have contributed to the rise of reported cases.

Too often, the victim is blamed when their image ends up online. This response disregards the victim’s right to privacy and denies them of their sexuality. Most would agree that a person’s consent to have sex with another does not amount to consent to sleep with all of his/her friends – but that is the very logic of those who say individuals ‘should have been more careful’ when their image is disclosed.

If you are a victim of revenge porn, the law can help you regain control and achieve justice.

The uploading of sexual or intimate images online, without the consent of the individual pictured, and with the intention to cause the victim humiliation or embarrassment, is a criminal offence in England and Wales.

The relevant law differs depending on whether or not the victim is over 18 years of age.

Section 33 of the Criminal Justice and Courts Act 2015 (‘CJCA 2015′) applies to adult victims and establishes a maximum sentence of 2 years’ imprisonment following conviction.

For s.33 CJCA 2015 to apply, the image(s) must be private and sexual. Certain parts of the body, like exposed genitals or pubic area, are considered inherently private for the purposes of the offence. Posing in a sexually provocative way will be regarded as private if the image depicts something that would not ordinarily be seen in public.

The victim must show that the reason, or one of the reasons, that their intimate image was shared without their consent was to cause the victim distress (the ‘distress element’). Without proving this, a victim will not be able to secure a conviction against the defendant. The distress element is a distinct part of the trial that will require its own evidence. It is not enough that distress is or would be a natural consequence of the disclosure.

Doctored and computer-generated images, also known as ‘deep fakes’, are not covered by the CJCA 2015. A victim who has had an innocent image transposed onto a pornographic photograph or film does not, unfortunately, have any specific law to draw on. Victims in this scenario should, however, discuss with their solicitor the possibility of securing a conviction under section 1 of the Malicious Communications Act 1988 and/or section 127 of the Communications Act 2003. Victims pursuing this route will still have to find evidence for the distress element in order to secure a conviction, as both s.1 and s.127 require that the message be sent to cause distress or anxiety, or be of a menacing character, respectively.

It is not guaranteed that a victim of revenge porn will be able to secure legal aid funding, but this is something you should ask your solicitor.

If you are a victim of revenge porn, the law can help you regain control and achieve justice.

Defences

It is a complete defense if the defendant reasonably believed that the disclosure was necessary for the investigation, prevention or detection of crime (s.33(3) CJCA 2015), or if the image is disclosed by a journalist who reasonably believes that publication is in the public interest (s.33(4)). A journalist relying on the s.33(4) defense will have to show that there was a legitimate need to publish the photograph or film that goes to the value of a story on an important matter. ‘Public interest’ in this context is not simply something with which the journalist believes the public will be interested.

It is a defense if the defendant believed that the image(s) had previously been made public for financial purposes, i.e. commercial pornography (s.33(5) CJCA 2015). However, a defendant will not be able to rely on s.33(5) if they had reason to believe that the victim had not consented to prior release.

Anyone who forwards on the image(s) without the victim’s consent is only guilty of a s.33 offence if they do so with the intention to cause the victim distress. Re-sending the image(s) as a joke or for sexual gratification will not amount to an offence merely because distress was a natural consequence of their actions (s.33(8)).

Children 

Possessing, taking, distributing or publishing sexual images of individuals under the age of 18 are offences under section 1 of the Protection of Children Act 1978 and section 160 of the Criminal Justice Act 1988. If you are under the age of 18 and your image has appeared online, the process is much simpler than if you were an adult. There is no need to show a distress element on behalf of the defendant.

Parents who have been made aware that their children have shared or have been sent sexual images should be aware that Crown Prosecution Service Guidelines on revenge pornography makes clear that consensual ‘sexting’ between minors of a similar age is not to be treated as an offence. Where there is evidence of grooming, harassment or exploitation then it will be treated as a criminal matter.

Websites

The CJCA 2015 makes it possible for the website operator who hosts the site on which an intimate image was illegally shared to be liable, but only when the operator has actively participated in the disclosure, or failed to remove the material once they have been made aware that it is criminal in nature. In reality, most social media sites will be compliant in removing such material on request.

If any of the matters discussed in this article affect you, visit https://revengepornhelpline.org.uk


Colette Allen has hosted “Newscast’” on The Media Law Podcast with Dr Thomas Bennett and Professor Paul Wragg since 2018. She has recently finished the BTC at The Inns of Court College of Advocacy and will be starting a MSc in the Social Sciences of the Internet at the University of Oxford in October 2021.

A look at the European Data Protection Board guidance on supplementary measures – Olivia Wint

Data transfers have been a prominent topic in the data protection world in recent months, with the UK’s recent adequacy decision adding to the conversation on the topic.

On 21 June 2021, the European Data Protection Board (“EDPB”) published the final version of Recommendations on supplementary measures (the “Recommendations”). For context, the first draft Recommendations which were published in November 2020 were prompted as a result of the much-anticipated Schrems II judgment which was handed down in July 2020.

The Schrems II judgment comes after the Schrems I judgment, which in 2015, invalidated the Safe Harbour regime in 2015. The focal point of the Schrems II case concerned the legitimacy of standard contractual clauses (“SCCs”) as a transfer mechanism in respect of cross border data transfers from the EU to the US. Max Schrems, a privacy advocate argued that Facebook Ireland transferring a significant amount of data to the US was not adequate due to the US’ surveillance programmes. Schrems argued that this fundament tally affected his right to ‘privacy, data protection and effective judicial protection’.  Rather unexpectedly, the Court of Justice in the European Union (“CJEU”) declared the invalidity of the privacy shield in this case and whilst SCCs were not invalidated, the CJEU laid down stricter requirements for cross border transfers relying on SCCs, which included additional measures to ensure that cross border transfers have ‘essentially equivalent’ protection to that of the General Data Protection Regulation 2016/ 679 (“GDPR”).

As a result of the Schrems II judgment and the invalidation of the privacy shield, the estimated 5300 signatories to this mechanism now need to seek alternate transfer mechanisms and companies on a transatlantic scale have been forced to re-examine their cross-border transfers. As such EDPB’s Recommendations could not have come sooner for many in the privacy world. 

Based on the Schrems II judgment, supplementary measures are in essence additional safeguards to any of the existing transfer mechanisms as cited in Article 46 GDPR, which include SCCs, binding corporate rules (“BCRs”) and approved code of conducts to name a few with the overarching objective of the supplementary measures to ensure the ‘essentially equivalent’ threshold is met.

The EDPB’s Recommendations, outline six key steps which comprise part of an assessment when deducing the need for supplementary measures:

  1. know your transfers;
  2. identify the transfer mechanism(s) you are relying on;
  3. assess whether the transfer mechanism you are relying on is effective in light of all circumstances of the transfer);
  4. identify and adopt supplementary measures;
  5. take any formal procedural measures; and
  6. re-evaluate at appropriate intervals.

Step 1- know your transfers

Step 1 concerns organisations having a good grasp on their data processing activities, mainly evidenced through data mapping and/or records of processing activities (“ROPAs”). As ROPAs are a direct obligation under the GDPR, in theory for most organisations it will be a case of ensuring that the ROPA accurately reflects any new data processing that has occurred (with the inclusion of any third parties).

Key data protection principles should also be considered for example, lawfulness, fairness and transparency (does the privacy policy make it clear that cross border transfers are taking place?), data minimisation (is the whole data set being transferred or just what is relevant?) and accuracy (have data quality checks been conducted on the data in question?).

The Recommendations stipulate that these activities should be executed before any cross-border transfers are made and highlights the fact that cloud storage access is also deemed to be a transfer too.

Step 2- identify the transfer mechanism(s) you are relying on

There are a number of transfer mechanisms that can be relied on for cross border data transfers, such as SCCs, BCRs, codes of conduct etc and adequacy decisions and this step requires organisations to identify the mechanism that will be used for the transfer.

EDPB has noted for organisations that will be using the adequacy decision as their desired transfer mechanism, the subsequent steps in the Recommendations can be discarded.

N.B. to date, the European Commission has only recognised Andorra, Argentina, Canada (commercial organisations only), Faroe Islands, Guernsey, Israel, Isle of Man, Japan, Jersey, New Zealand, Switzerland, Uruguay and the UK.

Step 3- Assess whether the transfer mechanism you are relying on is effective in light of all circumstances of the transfer

This is a critical part of the assessment and requires organisations to assess/ examine the third country’s legislation and practices to ascertain the extent to which there are limitations which may mean the protection afforded as a result of the cross-border transfer is less than ‘essentially equivalent’. The Recommendations affirm that the scope of the assessment needs to be limited to the legislation and practices relevant to the protection of the specific data you transfer. The legislation and/or practices examined must be publicly available in the first instance, verifiable and reliable.

Key circumstances which may influence the applicable legislation/ and or practices include (but are not limited to):

  • purpose for data transfer (marketing, clinical research etc);
  • sector in which transfer occurs (financial, healthcare etc);
  • categories of personal data transferred (children’s data, health data etc); and
  • format of the data (raw, pseudonymised, anonymised, encrypted at rest and in transit etc).

The assessment should be holistic in nature and cover all relevant parties such as controllers, processors and sub- processors (as identified in Step 1) and should consider the effectiveness of data subject rights in practice.

Examining of legislation and practices is of utmost important in situations when:

  1. legislation in third country does not formally meet EU standards in respect of rights/freedoms and necessity and proportionality;
  2. legislation in third country may be lacking; and
  3. legislation in third country may be problematic.

The EDPB stipulates that in scenarios i) and ii) the transfer in question has to be suspended, there is more flexibility in scenario iii) where the transfer may be either be suspended, supplementary measures may be implemented or continue without supplementary measures if you are able to demonstrate and document that the problematic legislation will not have any bearing on the transferred data.

Step 4- Identify and adopt supplementary measures

If as a result of Step 3, the assessment concludes that the transfer mechanism is not effective with third legislation and/ or practices, then the Recommendations urge that consideration needs to be given to whether or not supplementary measures exist that can ensure ‘essentially equivalent’ level of protection. Supplementary measures can be in a myriad of forms which include technical (controls such as encryption), organisational (procedures) and contractual and must be assessed on a case-by-case basis for the specific transfer mechanism.

N.B. A non-exhaustive list of supplementary measures include can be found in Annex 2 of the Recommendations.

Step 5- Take any formal procedural measures

A recurring theme throughout the Recommendations is the need for a nuanced approach to be adopted when assessing each specific transfer mechanism and as such, the procedural measures that will need to be taken are dependent on the specific transfer mechanism with some mechanisms requiring supervisory authority notification.

Step 6- Re-evaluate at appropriate intervals

As with all aspects of compliance, monitoring and re-evaluating of supplementary measures should be done frequently, the Recommendations do not explicitly define a time period, however factors which could impact the level of protection on transferred data such as developments in third country legislation will cause re-evaluation.

One of the main aims of the GDPR (and also one of the key principles) is that of accountability and the EDPB’s Recommendations on supplementary measures bolsters this premise. There is emphasis placed on documentation which adequately considers and records the decision-making process at each of the six steps to ensure organisations have an accurate audit trail.

In addition to the EDPB’s Recommendations, it is important for organisations (especially global ones) to take heed of any local developments in this area. With the CNIL already publishing guidance, the ICO expected to issue guidance and the Bavarian Data Protection Authority’s ruling against Mailchimp in this area, it can be said that supplementary measures will be crux of many impending data protection developments.

Olivia Wint is a seasoned data protection professional, with over five years experience in this area. Olivia has worked in a range of sectors including local authority, third sector, start-ups and the Big 4 advising on all aspects of data protection compliance.

Transgender Rights Charity Mermaids fined £25,000 by the ICO for data protection breaches

It is unfortunate at times that some charities which do the most sensitive of work also hold the most sensitive data. It makes data protection compliance all the more critical. Unfortunately, the transgender rights charity Mermaids has fallen afoul of data protection laws in the creation of a email group that was not sufficiently annexed or encrypted to protect the data it contained.

The result was that the 780 email pages were identifiable online over a period of three years. This led to the personal information of 550 people to be searchable online. Furthermore. the personal data of 24 of those people revealed how they were coping and feeling. Finally, for a further 15 classified as special category data as mental and physical health and sexual orientation were exposed.

Steve Eckersley, Director of Investigations at the ICO said:

“The very nature of Mermaids’ work should have compelled the charity to impose stringent safeguards to protect the often vulnerable people it works with. Its failure to do so subjected the very people it was trying to help to potential damage and distress and possible prejudice, harassment or abuse.

“As an established charity, Mermaids should have known the importance of keeping personal data secure and, whilst we acknowledge the important work that charities undertake, they cannot be exempt from the law.”

This serves a warning call for charities who process sensitive personal data – under the GDPR and the framework of self reporting you need to have appropriate technical measures in place. Failure to do so puts users data at risk and leaves them vulnerable. Mermaids penalty was imposed for the data being at risk for the period of 25 May 2018 to 14 June 2019.

It is notable that Mermaids data protection policies and procedures were not updated to reflect GDPR standards. Post the implementation of the Data Protection Act 2018 data protection practices are taking increasing importance and a robust review with practical changes to data harvesting, management, retention and rights handling is now a necessity.

Freelance Writer Role – The Privacy Perspective

About

The Privacy Perspective (“TPP”) is the go-to professional and consumer- accessible blog on England and Wales privacy law. TPP has been running for two and a half years and averages over three hundred views per month. Content from TPP has been reposted on Lawcareers.net and the International Forum for Responsible Media Blog. The Founder of the Blog, junior legal professional Suneet Sharma, runs the blog, which now posts on a monthly basis.

The Role

TPP is now looking for a legal professional to act as a Freelance Writer writing the Monthly Round Up, a monthly article summarising privacy law developments across, misuse of private information, data protection/data privacy and surveillance. The successful candidate will be paid £80.00 per completed article. All articles will go through our strict copy writing process. You will have first-class attention to detail, copy-writing and drafting skills and a demonstrable interest in English privacy law.

Equal Opportunities

We’re an equal opportunity employer. All applicants will be considered without attention to race, colour, religion, sex, sexual orientation, gender identity, national origin, veteran or disability status. If you identify as a minority, we encourage you to apply- TPP is a safe space that welcomes all.

How to apply

To apply please email a copy of your current CV and a writing sample of at least 500 words on a legal topic to suneet_sharma@outlook.com. Applications close midday 12 July 2021.  Whilst we will endeavour to contact all applicants regarding the outcome of their application we anticipate a high number of applicants.

Amazon looks to be fined EUR425m for GDPR breaches

The Wall Street Journal has cited sources close to the matter, stating Amazon looks to liable for the sum.

More information can be found in a recent post by Yahoo. TPP will be following the story closely and providing updates as we learn more.

For more information on GDPR fines see our post on Top 5 data breach fines since the implementation of the GDPR.