NHS Data … Philadelphia’s Heritage of LGBT+ Activism

News

From 1 July 2021 unless you opt out you will no longer control your NHS records and you only have until 23 June 2021 to opt out. This is the biggest data grab in the history of the health service. (Since writing the article, the deadline has been changed to 1 September 2021).

‘The proposals suggest mass collection of every English patient’s history, including mental health episodes, their smoking and drinking habits as well as diagnoses of diseases such as cancer.’ Photograph: Anthony Devlin / PA

Health data is both hugely sensitive and immensely valuable.

The UK’s NHS data alone has been valued at £10 billion, and our GP data is the most detailed, valuable and sensitive of all.

The government wants to extract the general practice history of every patient in England by 1 July. Haven’t you heard? Ministers are not exactly shouting about this momentous news. NHS Digital, the body proposing the new scheme, has described it as a way to “improve” the collection of patient information that would allow better planning of healthcare services and use of data in medical research.

The records being stored contain the most private details of a person’s life. The proposals suggest mass collection of every English patient’s history, including mental health episodes, their smoking and drinking habits, and diagnoses of diseases such as cancer. But it will also include dated instances of domestic violence, abortions, sexual histories and criminal offences. Given the proposed scope of such a database, it is reasonable to ask who will be given this data, and for what purpose.

While medical bodies have been consulted, they have hardly given the plans a ringing endorsement. GPs may be reluctant, as they will be accountable for the data transfer. The audit trails of much less detailed hospital data which has been transferred to the private sector hardly inspires confidence in this government’s willingness to hold to account institutions that ignore safeguards. Campaigners point to shocking failures to enforce patient privacy, with little comeback for transgressors.

England’s 55 million patients have until 23 June to opt out of the scheme, but without a debate about the pros and cons, the public will have good reason to be wary. A perceived lack of transparency risks losing the trust of the public at a time when the health service needs to preserve it.

This scheme is not to do with the pandemic. “Control of patient information” notices currently allow for access, and data-wrangling rights, to health records in connection with fighting Covid-19. Allowing access to NHS data has led to some groundbreaking research, notably helping to identify dexamethasone as an effective Covid therapy. However, this experience was born of acute need. The return of normal life is not an excuse to suspend the safeguards that protect patient privacy or allow third parties access to GP records, which cannot be rendered anonymous even by scrubbing some personal information.

How to opt out

None of the choices below will affect your medical care, or the data that is available for your care. 

If you live in England and want to stop your GP data leaving your GP practice for purposes other than your direct care, you can do so by filling in and giving or posting the form in step 1 to your GP:

1) Protect your GP data: fill in and give this ‘Type 1’ form to your GP practice – this form allows you to include details for your children and dependants as well. This is the most urgent step; the deadline to get your form to your GP practice is 23 June 2021, according to NHS Digital.

2) If you want to stop your non-GP data, such as hospital or clinic treatments, being used or sold for purposes other than your direct care (eg for “research and planning“) you must use this process:

If it’s just for yourself, use NHS Digital’s online National Data Opt-out process – this process only works for individuals aged 13 and over.

If you have an adult dependant for whom you have legal responsibility, you must use this form and send it back to NHS Digital on their behalf.

There is no deadline for step 2, the National Data Opt-out (ie your non-GP data), but the sooner you do it, the sooner it takes effect.  If you don’t have access to a working printer, you can ask the NHS Digital Contact Centre to post you the forms you need. Their phone number is 0300 303 5678 and they are open Monday to Friday, 9.00am to 5.00pm (excluding bank holidays).

Philadelphia’s Heritage of LGBT+ Activism

Philadelphia’s history of protest and activism is exceptional. From American colonists declaring independence from Great Britain, to abolitionists fighting against slavery, to women’s suffragists demanding voting rights, to civil rights activists calling for equality, the city has a deep history of social and political conflict and engagement.

The Philadelphia LGBT+ Heritage Initiative are recording this rich tradition of protest and action including:

Reminder Days
These were held annually at Independence Hall on 4 July from 1965 to 1969. Protesters gathered in front of Independence Hall to demand the public take notice of the discrimination that gay and lesbian American citizens endured – that not all Americans enjoyed the rights of “life, liberty, and the pursuit of happiness” enshrined in the Declaration of Independence.

These protests were organised by an alliance of homophile organisations, including the New York City and Washington DC Mattachine Societies, the Janus Society of Philadelphia, and New York City’s Daughters of Bilitis. As a collective, they were known as the East Coast Homophile Organisations (ECHO).

Organisers insisted on a strict dress code for participants, including jackets and ties for men and dresses for women; the goal was to present gays and lesbians as both “presentable” and “employable.” Veteran activists at the first Annual Reminder included Frank Kameny, Barbara Gittings, and Kay Tobin.

The Annual Reminders helped move gay and lesbian civil rights into the public consciousness and helped provide structure and organisation for the ongoing LGBT+ Civil Rights movement. After the Stonewall Uprising in June of 1969, the organisers of the Annual Reminders discontinued the annual pickets. Instead, they focused their attention to the Christopher Street Liberation Day held on 28 June 1970 to commemorate the anniversary of the Stonewall Uprising. Since then, June is traditionally the month of LGBT+ Pride celebrations.

Left: The first Annual Reminder in 1965 (photo: LGBT50.org).
Right: Marchers in 1969 (photo: Nancy Tucker/Lesbian History Archives)

The Pursuit is a reflection on the fight for LGBT rights, more than 50 years since protesters gathered in front of Independence Hall and called for an end to discrimination against homosexuals. Contrasting stories from LGBT experiences, past and present, a complex and vibrant picture emerges that demonstrates both how far the community has come and how far there is left to go.

Watch video (57 mins)

Manchester in bloom

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