Patient FAQs

General questions about JointPRO

• When should I register with JointPRO?

Patients are welcome to register with JointPRO at any stage of investigation, diagnosis, treatment or recovery.

• Once I am registered with JointPRO, what do I do next?

When you sign into JointPRO, there are two main tabs for you to explore (these are indicated in the bar across the top of the page):

1. ‘My Profile’

You will automatically be directed to this tab upon signing in to JointPRO. In the left-hand column of this page you will find a box containing three buttons named 'Notifications', 'Incoming Requests' and 'Outgoing invites' (see below for more information). Beneath this you will see five expandable sections named ‘About Me’, ‘Joint History’, ‘My Care’, 'Scoring Schedule' and 'Research Study'. 

Finally, and most importantly, at the top of this left-hand column you will see a large button displaying ‘Take a test’. Clicking on this button will guide you through a series of questions that will ask you for your views on your symptoms, functional status and health-related quality of life. The test should take you approximately 10 minutes to complete and is divided into four sections (all of which must be completed). Having completed your test, you will see your results displayed under ‘Progress graphs’. Your results are divided up into four sections - ‘My Joint Function’, ‘My Activities Progress’, ‘My General Health Progress’ and ‘My Overall Health Progress’ - corresponding with the four sections of the test.

2. ‘Information’

Clicking on this tab in the bar that runs across the top of the web page will direct you to a wealth of information that we hope is useful to you. There are four different categories of information for you to choose from:

-    Encyclopaedia

-    Joint Community

-    News and Research

-    Glossary

• What is the purpose of ‘Notifications’, ‘Requests’ and ‘Invites’?

Notifications 

-    You will be notified when people interact with you via the joint community or if a member of your clinical team has sent you a private message.

Incoming Requests

-    Your healthcare professional(s) is/are able send you a request to ask permission to monitor your progress on JointPRO. If you accept such a request, your healthcare professionals(s) will be able to view your profile – including your health record and scores, and will also be able to update your Joint History.

Outgoing Invites

-    You may wish to invite family and friends to register with JointPRO 

• Is my personal information safe?

We have used state-of-the-art policies and processes to project the privacy, confidentiality and security of your personal information.

-    The site is registered with and was developed in consultation with the Information Commissioner’s Office.

-    The data is stored on a single dedicated server based in a UK data centre, run by Rackspace, built to rigorous standards and conforming to ISO 27001 certification. 

-    All traffic between users and the server is encrypted using a 256bit SSL (Secure Sockets Layer) certificate.

-    The website has been built using Linux based industry standard web technologies, using its mature security framework to authenticate every user accessing the site. 

-    Site is protected by Cisco firewall to preventing network attacks. 

-    All personal information you provide us with will be encrypted using the industry standard AES algorithm (AES has been adopted by the United States government as their approved encryption algorithm and is in use by all the major banking groups). 

• How often should I score myself on JointPRO?

Having registered with JointPRO, you are welcome to take a test as often (or as little) as you like, although we do ask that, at a minimum, you score yourself once before your surgery, and once after your surgery. You will receive email (or text) reminders to score yourself once before any treatment that you undergo, at 6 weeks, 6 months and 1 year after your treatment, and then annually for 6 years thereafter. 

Remember that the more frequently you score yourself, the more information you and (with your consent) your clinical team have to support the decisions about your care. Your information may also contribute to effectiveness studies or help assess the relative clinical quality of providers - with the ultimate aims of a) delivering optimal patient care, b) maxmising patient experience, and c) achieving success for patients like you in the future.

• What information will be collected and processed about me?

We may collect and process the following personal information about you:

-    Any data which you provide when you register with JointPRO or when you complete a PROs questionnaire.  This data may include:

1. Information relating to your:

â–º Name

â–º Date of birth

â–º Email address

â–º Telephone number

â–º Gender

â–º Weight

â–º Height

2. Information relating to your medical condition as to:

â–ºYour medical condition, including affected joint and type of condition

â–º Treatment details

â–º Your mobility

â–º Self-care

â–º Levels of pain relating to the condition

â–º Levels of anxiety arising from the condition

â–º Personal aspiration relating to the condition and progress as against those aspirations

â–º Other relevant information relating to the condition

-    Any data that you provide via postings to forums and blogs and any other posting that you make to the public areas of the website.

-    If you contact us (whether via email, telephone or other means), the details of such correspondence.

-    Details of your visits to the website including, but not limited to, traffic data and location data.

• Who will have access to information about me and my joint disorder?

We may allow some or all of the following categories of persons to view your clinical profile and the information contained on such profile.  We will only do so where you have expressly consented to such sharing (either via your account privacy settings or by virtue of your invite to such persons to access your profile). In some cases you may access the website using a code which indicates that you are being cared for by a particular institution and/or you are participating in an [academic/clinical] study ("site-specific code"). In such cases, the site-specific code will allow for your information to be shared (in pseudonymised form) with the institution which is providing your care and/or conducting the [academic/clinical] study in question:

• Your Responsible Care Providers (namely GPs, Consultants and Physiotherapists); 
• Other Clinical Team Members who are assisting your Doctor or Physiotherapist with your clinical care (as verified by your Doctor or Physiotherapist); 
• (where you access the website using a site-specific code) the managers and senior administrative staff at the institution providing you with care (such as your hospital), whether that institution is a private healthcare provider or an NHS organisation;
• (if you are signed up to a specific academic/clinical study), to the Academic Researchers who are involved on such study; and
• (if you are an NHS Patient who has explicitly consented to this), the relevant national records system that monitors all admissions, appointments and attendances at NHS hospitals (such as the Hospital Episode Statistics (HES) database administered by the Health & Social Care Information Centre (HSCIC), the National Joint Registry (NJR) or such other replacement national records system, as applicable).

For the avoidance of doubt, where you are involved in a specific academic/clinical study or you have accessed the website using a site-specific code, your Information will be stored in pseudonymised form.  Imperial College researchers will also only be able to access Patient Information in pseudonymised form.  

This means that your data will be categorised by way of a specific numeric/code-based Patient ID rather than your name.  For [academic/clinical] studies, only the Lead Investigator for the relevant study (and the super-administrator responsible for the administration of the website) will hold the key enabling this Patient ID to be linked to your name. Where you have accessed the website using a site-specific code, only a single lead administrator at the institution providing you with care (and the super-administrator responsible for the administration of the website) will hold the key enabling this Patient ID to be linked to your name.

We may use your information in anonymised or aggregated form for any purpose provided that such use does not enable your information to be linked to you. Such use might include:

• use in aggregated form (ie collected together with similar data from other Patients) to provide information to other users of the website regarding certain metrics relating to specific medical conditions (such as average time for recovery, for example);

• sale or licensing of part or all of the aggregated data-set created from Patient's contributions to the website for commercial purposes (for example to manufacturers of implants or prosthetics) although we would normally only do so where such use or exploitation had the potential for improving the health and wellbeing of patients like you.

• How can my doctor keep track of my progress if he/she doesn’t use JointPRO?

Unfortunately your doctor will not be able to view your test scores if he/she is not registered with JointPRO.  On registering with JointPRO, you will have an opportunity to invite your GP or Consultant to register with JointPRO and permit him/her access to your profile. Don’t worry, if you already registered with JointPRO and would like to invite your doctor to register with JointPRO, you are able to do so under ‘My Care’. 

• I don’t have an email address, can I still use JointPRO?

Unfortunatley the registration process requires that you enter an email address. If you don’t have an email address, you are welcome to register using a (consenting) family member or friend’s email address. If you would rather that we don’t send correspondence to this email address after registration, you are able to opt to receive all correspondence via your mobile phone

• What if I have more than one affected joint?

The system enables you to track the progress of multiple affected joints, but exclusively hip and knee joints at the moment.

• I have a question about my health, can I contact JointPRO directly for advice?

No – unfortunately we are not able to offer you any medical advice. If you have any concerns about your health please contact the medical profession.

Altering account information

• How do I change my password?

To change your password, click on your name in the top right hand corner of the screen and select the ‘account settings’ option from the drop down menu. Selecting ‘Personal Information’ from the menu on the left hand side of the pop-up will enable you to change your password. You will need to enter your old password, and then your new choice of password twice.

• Am I able to change my username?

Unfortunately you are not able to change your username once it has been set in the registration process.

• How do I update my email address

To change your email address, click on your name in the top right hand corner of the screen and select the ‘account settings’ option from the drop down menu. Selecting ‘Personal Information’ from the menu on the left hand side of the pop-up will enable you to change your email address. 

• How do I change my email preferences?

To change your email notification preferences, click on your name in the top right hand corner of the screen and select the ‘account settings’ option from the drop down menu. Selecting ‘Email settings’ from the menu on the left hand side of the pop-up will enable you to change your email preferences.  

• How do I change my information sharing preferences?

To change your confidentiality settings, click on your name in the top right hand corner of the screen and select the ‘account settings’ option from the drop down menu. Selecting ‘Information sharing options’ from the menu on the left hand side of the pop-up will enable you to change your information sharing preferences.   

• How do I close my account?

To close your account, click on your name in the top right hand corner of the screen and select the ‘account settings’ option from the drop down menu. Selecting ‘Close my account’ from the menu on the left hand side of the pop-up will enable you to close your account.

Dealing with abuse

• What should I report?

We encourage you to report any content that you find offensive, abusive, inappropriate or simply nonsensical.

• What happens when I report content?

An alert is sent to the system administrator who will accordingly take the appropriate measure.

• How do I report content?

To report content you must be a registered member of JointPRO. Having logged into your account, please click on your name in the top right hand corner of the web page, and select ‘Feedback’ from the drop down menu. In the drop down menu under “Reason for your message’ you will find ‘Report an error or abuse’.