Data protection laws in the UK are changing. The General Data Protection Regulation (GDPR) passed in Europe in 2016, and it comes into force on 25 May 2018. Some of the elements of the legislation have to be passed in the UK Parliament. This is being delivered through the Data Protection Bill, which is currently going through Parliament. The Bill has passed through the House of Lords and is now at the Committee Stage in the House of Commons.

Our member, Unique – the Rare Chromosome Disorder Support Group, and their patron Baroness Pauline Neville-Jones, alerted the Government to the risk posed by GDPR to the wealth of information patient organisations have in their databases. The new approach to regulating data processing will require a higher bar of consent than the previous approach, and preliminary guidance is that this consent be reinforced with regular re-consenting.

Unique has since been working with Genetic Alliance UK to ensure that patients and their representative groups are not disadvantaged by the new legislation.

What’s the problem?

Some of Genetic Alliance UK’s member groups collect valuable data from their members about their condition. This data can be used to produce information about the condition and to inform the support our members provide. This data is especially valuable when it describes rare conditions, as these might not be well understood, might be quite varied in how they affect people and because the data is scarce. Our concern is that patients and families affected by serious genetic conditions lead such busy and sometimes unpredictable lives, that regular response to re-consent requests will often fall off their priority lists. Without this reinforced consent our member groups might have to anonymise (remove any identifying information) or delete valuable information.

What have we done?

Unique, Baroness Pauline Neville-Jones, and Genetic Alliance UK (with help from our members) asked the Government to amend the Data Protection Bill. We called for a change that would allow our members and others in a similar situation, to process their data for patient support, and to raise awareness, outside the usual consent requirements.

What does this mean for our community?

The amendment means that patient organisations, including our growing membership, will be allowed to continue to use their members’ data where they cannot reasonably obtain consent to do so. For example, when the member has been out of touch for a long period of time because they have been busy caring for their sick and disabled child and could not always be reached.

Members groups will not have to reach every patient or family that has provided data to them in the past to reinforce the consent to use their data, nor will they have to remove valuable information from their databases or records, provided they are using the data for awareness raising and support.

This measure does not remove the concept of consent for patient data within patient groups. Patient data must be collected with consent and any refusal or withdrawal of consent must be honoured. It also does not apply to data used for fundraising.

Sophie Sainty, Trustee and past Chair of Unique, who led Unique’s efforts to raise the risks of GDPR to patient support groups, said:

‘The Government has recognised the vital work that Unique and similar organisations do in helping children and adults affected by rare chromosome disorders leading to learning difficulties, disability, autism and complex medical problems, as well as their doctors.  Without this amendment to the Data Protection Bill, GDPR would have had a damaging effect on our ability to provide information and support to individuals affected by rare disorders and to help patient support groups to link up affected families. This is essential when the only other person with the same disorder as your child may be on the other side of the world.’

Unique and Genetic Alliance UK have worked hard to make sure that the amendment applies to all patient organisations; this amendment is not just for rare or genetic patient support groups.

This is not law yet, but given that amendment was accepted without debate, we expect this will be a positive change to the future of data regulation in the UK.

Jayne Spink, Chief Executive of Genetic Alliance UK, said:

‘Data on the experiences of patients and families’ experiences of living with a rare genetic condition is both scarce and tremendously valuable. This amendment will ensure our members can continue to collect and use this information both to raise awareness and to support patients and families. We would like to thank the team at Unique, Baroness Pauline Neville-Jones, and the Department of Culture, Media and Sport for all of their hard work to make this happen.’

Beverly Searle, Chief Executive of Unique, said:

‘Unique’s member families have been incredibly generous over many years in freely providing information about the lifetime effects of their children’s rare chromosome disorders, not only to help them find others with a similar disorder but also, for example, to enable Unique to produce a series of guides to over 250 of some of the rarest disorders for which there was little or no published data.  The thought that some of this precious information would have to be deleted from our database just because a family caring for their sick and disabled child could not always be reached for re-consent was deeply concerning.’

If you want to find out more about GDPR join our webinar on 17 April where we are joined by an expert panel. Register before 31 March here.

More information about charitable fundraising and the GDPR can be found on the website of the Fundraising Regulator here.