About HAKIR

Information about the national quality register for hand surgery HAKIR is at present only available in English. We have translated some of the forms, which can be downloaded below.

 

Manuals

National Manual – For measuring motion and strength in the elbow, forearm and hand. 

National assessment manual – For assessment of hand function after nerve repair

Information brochure 

What is a quality register?

Quality registers are common in Swedish healthcare and the purpose is to enable improvement work and research that gradually improves care for you as a patient through individual-based follow-up of, among other things, care efforts and treatment results. HAKIR was started in 2008 on the initiative of the Swedish Hand Surgical Association and is today a web-based national quality register covering large parts of the country’s hand surgery. HAKIR is affiliated to Register Centre South.

About HAKIR

Information is collected from your medical records, yourself and the healthcare professional responsible for your care. Your personal data, diagnosis, surgery, and any complications are recorded.

You are asked to answer questionnaires regarding your symptoms and experience of care. The questionnaires are sent out before your operation, three weeks and three and twelve months after your operation.

Your answers are processed anonymously and do not affect your continued care. After some operations, an extended follow-up is made of, among other things, force and mobility, and sometimes an X-ray check is also included. These follow-ups can often be done in conjunction with visits that are already included in your care plan.

Why is HAKIR so important?

We are keen for you to get the best care with us and therefore want to know how you have experienced your treatment. We want to be able to compare different surgical methods to gradually improve the results and reduce the incidence of complications. We also want to be able to provide accurate information before surgery about what results you can expect after a certain procedure and about the risk of complications.

Please read more on our website, hakir.se about how we use HAKIR. Your answers will help us provide our future patients with even better care.

Our patient surveys

You are asked to answer our surveys via your account in 1177 Vårdguiden’s E-services. The questionnaires are sent out before your operation, three weeks and three and twelve months after your operation.

You have the opportunity to answer the survey for 28 days from the time you receive it to your inbox on 1177.

Make sure that your 1177 account is activated and that your settings are up to date. You must choose to receive your information digitally via 1177 and activate your notifications. You log in to 1177 with your bank ID. No questionnaires are administered to children under the age of 13.

Privacy and security

All personal data is covered by the Public Access to Information and Secrecy Act (2009:400) and is processed in the same way as medical records. There are specific requirements on how data collected in quality registers may be handled and disclosed. This means, among other things, that data that you enter yourself is encrypted and that only authorized personnel, the register holder and RC Syd have direct access to the register, who also log in with special cards. The data may only be used to develop and ensure the quality of care, to produce statistics, to calculate the number of patients for clinical research and for research in health care. The information may also, after a confidentiality check, be disclosed to someone else who will use it for any of these purposes. If information may be disclosed, it may be done electronically. All use for research purposes requires approval by the Ethical Review Board.

The Regional Archives in the Stockholm region has, in accordance with Chapter 7. Section 10 of the Patient Data Act (2008:355) approved that personal data in HAKIR may be retained for two years, whereupon the register submits a request for extension if necessary.

Registration in quality registers is voluntary and you can choose at any time to have your data deleted from the register or cancel an ongoing registration. You have the right to receive information about what access has taken place to your personal data, receive damages if they have not been processed in accordance with the Patient Data Act or the Data Protection Regulation, and request correction if they are incorrect. You have the right to know what personal data has been registered about you in a so-called register extract. Such request shall be in writing and signed by you. You can find all the contact details you need below.

Dataskyddsförordningen

The General Data Protection Regulation, or GDPR as it is also called, contains rules on how you may process personal data. The regulation entered into force on 25 May 2018. For more information, we refer to the Swedish Data Protection Authority or contact the staff.

For contact with your local HAKIR coordinator, see contact details under the tab local coordinators

 

Contact details of the central working group:

Registerhållare

Marianne Arner

E-post: ma@hakir.se

National Registry Coordinator

Annika Elmstedt

E-post: ae@hakir.se

Contact

E-post: info@hakir.se

Central data controller

Södersjukhuset AB

Data Protection Officer (general questions about personal data management)

E-post: GDPR.sodersjukhuset@regionstockholm.se

Forms

01a Dupuytren operation form

01b Dupuytren function form

002 Basic form operation

003b HQ-8 English questionnaire Postoperative

 

The General Data Protection Regulation

The General Data Protection Regulation (GDPR) is a regulation in EU law on data protection and privacy for all individuals within the European Union. It also addresses the export of personal data outside the EU. The GDPR aims primarily to give control to citizens and residents over their personal data and to simplify the regulatory environment for international business by unifying the regulation within the EU. It becomes enforceable on 25 may 2018. For more information please visit; Datainspektionen

 

EFORT review HAKIR 2016