Request for statistics on data charges and revenue

Scott Edmunds made this Freedom of Information request to Hospital Authority

This request has been closed to new correspondence from the public body. Contact us if you think it ought be re-opened.

The request was partially successful.

Dear Hospital Authority,

I would like to get statistics on how many requests you get from researchers/external users per year for your data, and what do you charge them for accessing this? Do you have a standard charges, or is this decided on an ad hoc basis? Most importantly, what is your yearly revenue from selling this data? The most recent year you have this information for (e.g. 2014 or 2015) will suffice.

Yours faithfully,

Scott Edmunds

This is to acknowledge receipt of your e-mail message.
 
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Hospital Authority ([1]www.ha.org.hk)
 
 
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醫院管理局 ([2]www.ha.org.hk)
 
 
=====================================
 
谢谢阁下的电子邮件。
 
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医院管理局 ([3]www.ha.org.hk)
 

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Dear Mr Edmunds,

 

Thank you for your Application for Access to Information dated 11 May
2016.

 

As the processing of your request involves the search of records, we are
unable to provide you with the information sought at this stage.  You will
be advised further in relation to your request on or before 31 May 2016.

 

Should you have any questions in the meantime, please contact me at 2300
6568 or 2300 6555.

 

 

 

Yours sincerely,

Sandy Chu(Miss)

Access to Information Officer

Hospital Authority Head Office

 

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Dear Mr Edmunds,

 

Further to our reply dated 20 May 2016, please find below the Hospital
Authority’s response:

 

The principal core function of the Hospital Authority (HA) is to provide
public healthcare services to eligible residents of Hong Kong. Patients
using the HA’s services will have their personal data as well as clinical
care process data collected. The main purpose of data collection is to
facilitate the treatment and care process, as well as for overall services
planning and development. HA produces an annual Statistical Report and
also provides information, including statistical information, to the
Legislative Council (in response to over 280 questions in the financial
year 2014/15) on a regular basis, both of which are accessible by the
general public via the internet.

 

For other external requests for data and statistical information, the HA
usually provides readily available statistics wherever appropriate.
However, a proportion of these requests must require our considerable
efforts to extract and consolidate data from multiple clinical information
systems within the HA with the use of different software programming
techniques. And they come from academia for academic research purpose.

 

The HA has a mechanism in place to vet all these external data requests
for academic research in accordance with the HA Standard Procedures. The
requests will be approved if all the requirements of our standard
procedures, particularly on patient data privacy, relevance of data to
study protocol, reasonable data quality and ethics approval, are
satisfactorily fulfilled.

 

When the data request is accepted by the HA, a charge will be made for the
provision of data because it is outside our core duties and requires
considerable amount of staff time with expertise in various computer
programming techniques to extract and consolidate data across multiple
clinical information systems. The requestor is informed of this charge for
performing the data extraction, and after obtaining his/her agreement, the
HA will proceed to process the request. The charge is calculated according
to the manpower resources required at the working level for processing the
request, which is based on the estimated man hours required for our
supporting statistical staff to prepare and produce the dataset according
to the agreed data requirements. The charge is to cover the labour costs
of the supporting staff only, and from time to time we need to employ
temporary staff to cope with extra workload as a result that some
permanent staff resources have been deployed to process these external
data requests.

 

In the past two years, we received around 14 data requests for academic
research per year and a total charge of around $250,000 per year in order
to recover the additional cost and manpower required.

 

Please do not hesitate to contact me if you have any questions about this
reply.

 

 

 

Yours sincerely,

Sandy Chu(Miss)

Access to Information Officer

Hospital Authority Head Office

(Tel.: 2300 6568/2300 6555)

 

From: [1][Hospital Authority request email]
Sent: Friday, May 20, 2016 2:12 PM
To: '[FOI #83 email]'
Subject: Freedom of Information request - Request for statistics on data
charges and revenue (Application for Access to Information from Scott
Edmunds)

 

Dear Mr Edmunds,

 

Thank you for your Application for Access to Information dated 11 May
2016.

 

As the processing of your request involves the search of records, we are
unable to provide you with the information sought at this stage.  You will
be advised further in relation to your request on or before 31 May 2016.

 

Should you have any questions in the meantime, please contact me at 2300
6568 or 2300 6555.

 

 

 

Yours sincerely,

Sandy Chu(Miss)

Access to Information Officer

Hospital Authority Head Office

 

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Dear [email address],

Many thanks for clarifying much of my question. Can I ask where the annual Statistical report is located, as I can only find them up to 2012/2013 (https://www.ha.org.hk/gallery/ha_publica...). Can I also follow up on a few a few other points?

1. When you say "In the past two years, we received around 14 data requests for academic
research per year", how many of these did you approve, and if you turned some down for what were the reasons for this?

2. I appreciate there may be costs involved in collecting this data, and issues of data privacy that will necessitate anonymization, but once this is carried out and the data has been safely safely de-identified and anonymised, can researchers share this data further? If another researcher wanted to use the exact same data for another project would the HA allow this, and are there any additional costs or charges? As all the costs are in the collection and electronic dissemination is effectively free, could I request previously collected data via a request such as this, and could this be uploaded to data.gov.uk to maximise its reuse and benefit for public health and research?

3. The US and UK research funders have all given strong commitments to publicly funded research data, and the European Union has just pledged a mandate for all its funded research by 2020. With concerns about irreproducible research and fraud, journals are increasingly mandating the supporting data behind publications to be released as well. As the worlds largest journal PLOS has since 2014 had a firm mandate that data be released, do you have any policies on researchers publishing in these journals releasing their supporting (safely anonymised) data in a public repository such as Zenodo, Figshare or Dryad?

Yours sincerely,

Scott Edmunds

This is to acknowledge receipt of your e-mail message.
 
(The above is generated by an auto-reply programme)
 
 
 
Hospital Authority ([1]www.ha.org.hk)
 
 
=====================================
 
謝謝閣下的電子郵件。
 
(以上為電腦自動發出的訊息)
 
 
 
醫院管理局 ([2]www.ha.org.hk)
 
 
=====================================
 
谢谢阁下的电子邮件。
 
(以上为电脑自动发出的讯息)
 
 
 
医院管理局 ([3]www.ha.org.hk)
 

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enqu[email protected], Hospital Authority

Dear Mr Edmunds,

 

Thank you for your application dated 9 June 2016.

 

As the processing of your request for information involves consultation
with various parties concerned, we are unable to provide you with the
information at this stage.  You will be advised further in relation to
your request on or before 29 June 2016.

 

Should you have any questions in the meantime, please contact me at 2300
6568/2300 6555 or Ms H L Tsang at 2300 7422/2300 6555.

 

  

Yours sincerely,

Sandy Chu (Miss)

Access to Information Officer

Hospital Authority Head Office

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Dear Mr Edmunds,

 

Further to our reply dated 13 June 2016, please find below the Hospital
Authority’s response:

 

(1)      The Hospital Authority (HA) Statistical Report (2014-15 is the
latest version) can be accessed via the HA’s following webpage:

 

[1]http://www.ha.org.hk/visitor/ha_visitor_...

 

(2)      For all external data requests for academic research which have
been so far vetted under the current HA mechanism, they have been entirely
accepted although some of which were required to refine some data
requirements to fulfil the HA Standard Procedures and were agreed by the
respective requestors after communication.

 

(3)      To recap, the principal core function of the HA is to
provide public healthcare services to eligible residents of Hong Kong.
Patients using the HA’s services will have their personal data as well as
clinical data collected during the care process. The main purpose of data
collection is to facilitate the treatment and care process, as well as for
overall services planning and development. While the HA supports academic
research through the set-up of a mechanism to vet and process external
data requests for academic research in accordance with the HA Standard
Procedures, the HA is also obliged to comply with the Personal Data
(Privacy) Ordinance.

 

For those external data requests which require patient-based records for
academic research, although they are de-identified, each record contains
personal particulars and clinical care information pertaining to an
individual person. If it were to be cross-matched with other database,
there is a potential chance to re-identify a particular patient through
matching on multiple data fields. Also, this violates the Personal Data
(Privacy) Ordinance (Chapter 486, Section 30 – matching procedure not to
be carried out except with consent of data subject). Therefore, requests
for the HA patient data for academic research purposes are considered on a
case-by-case basis. In the case when the data request is accepted by the
HA, the requestors have to undertake that they must not use the data for
any projects/purposes other than the original study, except with the HA’s
prior written approval. In addition, they are requested to destruct and
delete the patient data from their computer system or other records in
whatever form or medium after study completion.

(4)      The HA’s current mechanism for handling external data requests
for academic research is stated in point (3) above. As the use of the HA
data is for statistics and research purposes, only aggregated or summary
data can be presented or published. The requestors are required to
undertake not to disclose or make any reference to individual
patient-based records or data in publication, which implies that releasing
the data in a public repository is not allowed. Also, the requestors are
required to destroy the patient data released by the HA after study
completion.

 

Please do not hesitate to contact me at 2300 6568/2300 6555 or Ms H L
Tsang at 2300 7422/2300 6555 if you have any questions about this reply.

 

 

Yours sincerely,

Sandy Chu (Miss)

Access to Information Officer

Hospital Authority Head Office

 

From: [2][Hospital Authority request email]
Sent: Monday, June 13, 2016 5:52 PM
To: '[FOI #83 email]'
Subject: Freedom of Information request - Request for statistics on data
charges and revenue (Application for Access to Information from Scott
Edmunds)

 

Dear Mr Edmunds,

 

Thank you for your application dated 9 June 2016.

 

As the processing of your request for information involves consultation
with various parties concerned, we are unable to provide you with the
information at this stage. You will be advised further in relation to your
request on or before 29 June 2016.

 

Should you have any questions in the meantime, please contact me at 2300
6568/2300 6555 or Ms H L Tsang at 2300 7422/2300 6555.

 

 

Yours sincerely,

Sandy Chu (Miss)

Access to Information Officer

Hospital Authority Head Office

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Dear [email address],

Thanks again for clarifying further. As the aggregate/summary data is safe and allowed to be published/shared, can you share with me the summary data from the previous 14 applications, and can this be posted in data.gov.hk to maximise its re-use by the research community?

Another question is can researchers could share data with other researchers with your permission? For instance if I could share the data I paid for with another researcher assuming the other researchers project was approved by you, can they get the data from me, rather than having to pay the fee to you again?

Yours sincerely,

Scott Edmunds

This is to acknowledge receipt of your e-mail message.
 
(The above is generated by an auto-reply programme)
 
 
 
Hospital Authority ([1]www.ha.org.hk)
 
 
=====================================
 
謝謝閣下的電子郵件。
 
(以上為電腦自動發出的訊息)
 
 
 
醫院管理局 ([2]www.ha.org.hk)
 
 
=====================================
 
谢谢阁下的电子邮件。
 
(以上为电脑自动发出的讯息)
 
 
 
医院管理局 ([3]www.ha.org.hk)
 
  ________________________________  
Support Organ Donation – Register NOW!
支持器官捐贈 – 立即登記!
[4]http://www.ha.org.hk/organdonationcampaign

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Dear Mr Edmunds,

 

Thank you for your application dated 21 July 2016.

 

As your request for information involves consultation with various parties
concerned, we are unable to provide you with the information at this
stage.   You will be advised further in relation to your request on or
before 10 August 2016.

 

Should you have any questions in the meantime, please contact me at 2300
6568 or 2300 6555.

 

 

Yours sincerely,

Sandy Chu (Miss)

Access to Information Officer

Hospital Authority Head Office

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Dear Mr Edmunds,

 

Further to our reply dated 28 July 2016, please find below the Hospital
Authority’s response:

 

(1)   Regarding the previous 14 applications, they are all for academic
research. They are conducted in accordance with the research protocol.
Study findings, including aggregate/summary data, are normally published
in peer review journals.  

 

(2)   All external data requests for academic research are considered on a
case-by-case-basis. When it is assessed to be appropriate to release the
Hospital Authority data for academic research, requestors are required to
undertake and agree that only the authorised users will be given access to
the data and they have to keep the data in safe and secure custody to
protect the data against unauthorised or accidental access, processing,
erasure, loss or use. In addition, they must not transmit or release the
data, in whole or in part and in whatever form or media, to any other
parties. 

 

Please do not hesitate to contact me if you have any questions about this
reply.

 

 

 

Yours sincerely,

Sandy Chu (Miss)

Access to Information Officer

Hospital Authority Head Office

(Tel.: 2300 6568/2300 6555)

 

From: [1][Hospital Authority request email]
Sent: Thursday, July 28, 2016 2:36 PM
To: '[FOI #83 email]'
Subject: Freedom of Information request - Request for statistics on data
charges and revenue (Application for Access to Information from Scott
Edmunds)

 

Dear Mr Edmunds,

 

Thank you for your application dated 21 July 2016.

 

As your request for information involves consultation with various parties
concerned, we are unable to provide you with the information at this
stage.   You will be advised further in relation to your request on or
before 10 August 2016.

 

Should you have any questions in the meantime, please contact me at 2300
6568 or 2300 6555.

 

 

Yours sincerely,

Sandy Chu (Miss)

Access to Information Officer

Hospital Authority Head Office

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Dear Sandy/[email address],

Regarding both of these points, for aggregate/summary data that is totally anonymised, safe and allowed to be published/shared, do you still restrict its sharing between researchers? Can you not share with me now whatever is in this processed, aggregated and safe form from the previous 14 applications? If data is not identifiable in any way, arguments about protecting patients are not valid, and are if anything actually detrimental to their and the public health.

Also what is the authorisation process, and how do you define "academic research"? I work for a non-for-profit research organisation, so do you only authorise use by university researchers? What about people carrying out research in the private sector, for example developers of healthcare apps? Or patient advocates and citizen scientists? Are there geographic restrictions on who you will provide access to this data as well?

Yours sincerely,

Scott Edmunds

This is to acknowledge receipt of your e-mail message.
 
(The above is generated by an auto-reply programme)
 
 
 
Hospital Authority ([1]www.ha.org.hk)
 
 
=====================================
 
謝謝閣下的電子郵件。
 
(以上為電腦自動發出的訊息)
 
 
 
醫院管理局 ([2]www.ha.org.hk)
 
 
=====================================
 
谢谢阁下的电子邮件。
 
(以上为电脑自动发出的讯息)
 
 
 
医院管理局 ([3]www.ha.org.hk)
 
  ________________________________  
Support Organ Donation – Register NOW!
支持器官捐贈 – 立即登記!
[4]http://www.ha.org.hk/organdonationcampaign

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Dear Mr Edmunds,

 

Thank you for your application dated 10 August 2016.

 

As your request for information involves consultation with various parties
concerned, we are unable to provide you with the information at this
stage. You will be advised further in relation to your request on or
before 30 August 2016.

 

Should you have any questions in the meantime, please contact me at 2300
6568 or 2300 6555.

 

 

 

Yours sincerely,

Sandy Chu (Miss)

Access to Information Officer

Hospital Authority Head Office

 

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Dear Mr Edmunds,

 

Further to our reply dated 12 August 2016, please find below the
Hospital Authority’s (HA’s) response as marked in blue:

 

(1)  “Regarding both of these points, for aggregate/summary data that is
totally anonymised, safe and allowed to be published/shared, do you still
restrict its sharing between researchers? Can you not share with me now
whatever is in this processed, aggregated and safe form from the previous
14 applications? If data is not identifiable in any way, arguments about
protecting patients are not valid, and are if anything actually
detrimental to their and the public health.”

 

The context of aggregated or summary data mentioned in point (4) of the
HA’s previous response dated 16 June 2016 refers to the key research
findings published by the principal investigator after completing his/her
academic research.  These research findings, presented in aggregated or
summary data format, are accessible to general readers of the journal. 
Interested readers may, with the permission of the journal, re-use or
re-analyse the aggregated or summary data for a specific purpose.  The HA
does not restrict sharing of these published data.

 

(2)  “Also what is the authorisation process, and how do you define
"academic research"?  I work for a non-for-profit research organisation,
so do you only authorise use by university researchers? What about people
carrying out research in the private sector, for example developers of
healthcare apps? Or patient advocates and citizen scientists?  Are there
geographic restrictions on who you will provide access to this data as
well?”

 

Academic research refers to those research studies that are guided by
proper research protocols and research ethics.  Individual research
protocol spells out clearly the study hypothesis, aims/objectives of the
research, study design and methodology including sampling frame, sample
size, selection of study subjects, and sources of data, as well as method
of statistical modelling and analysis etc.  Hence, academic research has
high scientific merit that encompasses amongst other things originality,
scientific rigour, sound study design and methods, and local relevance and
importance of the research questions.  As mentioned previously, the
principal core function of the HA is to provide public healthcare services
to eligible residents of Hong Kong.  Resources deployed by the HA are
geared towards this principal function of healthcare service provision. 
In facilitating research, the HA considers whether the issue to be
addressed is of local relevance, significance and importance and whether
the study is of scientific merit and governed by research ethics.

 

Please do not hesitate to contact me if you have any questions about
this reply.

 

 

Yours sincerely,

Sandy Chu (Miss)

Access to Information Officer

Hospital Authority Head Office

(Tel.: 2300 6568/2300 6555)

 

From: [Hospital Authority request email]
Sent: Friday, August 12, 2016 6:21 PM
To: '[FOI #83 email]'
Subject: Freedom of Information request - Request for statistics on data
charges and revenue (Application for Access to Information from Scott
Edmunds)

 

Dear Mr Edmunds,

 

Thank you for your application dated 10 August 2016.

 

As your request for information involves consultation with various parties
concerned, we are unable to provide you with the information at this
stage. You will be advised further in relation to your request on or
before 30 August 2016.

 

Should you have any questions in the meantime, please contact me at 2300
6568 or 2300 6555.

 

 

 

Yours sincerely,

Sandy Chu (Miss)

Access to Information Officer

Hospital Authority Head Office

 

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