• What is JointPRO?

JointPRO is a remote web-based tool that electronically captures joint-specific patient-reported outcomes (PROs), giving feedback to the patient, and relaying real-time information to the care provider.

• What are PROs? 

-    “A patient-reported outcome (PRO), otherwise know as a patient reported outcome measure (PROM), is a series of questions that patients are asked in order to gauge their views on their own health.”¹

-    “PROMs seek to ascertain patient’s views of their symptoms, their functional status, and their health related quality of life.”²

-    “PROMs measure health by comparing a patient’s health at different times – and thus the outcomes of the care received can be determined.”²

-    “The use of PRO instruments is part of a general movement toward the idea that the patient, properly queried, is the best source of information about how he or she feels.”³

• What is the need for PROs?

“To measure is to know and if you cannot measure it, you cannot improve it” – Lord Kelvin

The ability to accurately measure treatment efficacy is vital to improve patient care. Traditionally, our appreciation of the effectiveness of any intervention has primarily relied upon adverse outcomes, such as post-surgical outcomes, or clinical indicators. While useful, these measures do not always distinguish the aspects of health that patients consider important, or their relative value to patients. 

It is said that ‘the ultimate measure by which to judge a medical effort is whether it helps patients as they see it’⁴. The introduction of Patient Reported Outcome Measures (PROMs) into the NHS reflects a growing recognition that the patient’s perspective is pivotal in improving the quality and effectiveness of healthcare. Under the National PROMs Programme, all NHS patients undergoing hip or knee replacement surgery are invited to complete a paper-based PROs questionnaire, once pre-operatively and once post-operatively.

• What is the need for JointPRO?

Currently, the way in which PROs are captured and shared, limits the potential use of this information in alleviating the burden of osteoarthritis and other joint conditions:

-Established PRO questionnaires fail to consider individual patients’ concerns and aspirations. Whilst the result is a useful measure of surgical outcome for researchers, it is of little direct value to the people that matter most i.e. the patients themselves.

-The current nature of PROs questionnaires also results in a ‘ceiling effect’, which limits the sensitivity of the tool in assessing patient outcomes.

-The accuracy of PROs data often relies upon patients’ ability to recall historic information, and their lack of engagement with the process may compound any data inaccuracies.

-NHS PROs data is not available to clinicians, inhibiting its use at the point of care to support informed clinical decision-making.

-The true value of PROs lies in being able to capture changes in health over time, which is difficult to achieve with the paper based method.

-Results from paper questionnaires are scanned or manually entered into a database (at an estimated cost of £6.50 per patient), representing an unnecessary economic and environmental cost.

-Time-consuming, manual audits are required to analyse collected data.

-Such is the administrative burden of a paper-based system that routine collection of PROs in NHS patients with joint disease is limited to those undergoing hip or knee replacement. 

Above all, at present patients themselves have limited access to their PRO scores, denying them a valuable opportunity to engage with their medical condition and treatment decisions. This represents a missed opportunity in the drive towards patient partnership, with its perceived benefits of better, less costly, and more effective care.

• How does JointPRO address this need?

The development of JointPRO has been based on the success of social media in revolutionising the uploading and sharing of information. Patients’ self-reported health is evaluated using validated PRO instruments (Oxford Scores and EQ5D), in addition to a novel PRO instrument that has been developed in our lab. The latter is unique in allowing each patient’s personal aspirations to determine the success or otherwise of an intervention. This heightens patient relevance and sensitivity, as well as eliminating the ceiling effect associated with traditional scoring systems.

JointPRO encourages patients to login and score their self-reported health at regular intervals, pre- and post-operatively, so that changes in PROs over time may be reliably assessed. This quantifiable patient-reported information will be accessible in real-time to consented patients, healthcare professionals (HCPs) and researchers.

It enables patients to access and track their progress over time, whilst viewing their scores in the context of a patient-matched group and their own individual aspirations. This facilitates patient partnership with the medical team by providing a platform for patients to co-own their clinical episode - empowering patients to set personal aspirations, make treatment decisions, and direct their functional rehabilitation.

JointPRO provides HCPs with a valuable tool to support clinical decision-making and actively monitor their patients. Critically, it obviates the need for unnecessary clinic appointments, enabling targeted patient reviews. This is more convenient for the patient, yet maintains adequate surveillance at a time when the economic realities force clinical commissioning groups to restrict outpatient appointments.

Importantly, making our secure data repository accessible to consented researchers to explore factors influencing clinical effectiveness, thus informing future treatment, while continuous remote data collection enables rapid audit of any element of the care pathway.

• Who is JointPRO for?

JointPRO is for patients with long-standing hip or knee pain, healthcare professionals and researchers.

• How can JointPRO help me? 

To find out how JointPRO can help you, click here 

• When was JointPRO developed?

JointPRO began evolving in 2010 and has since undergone several phases of development to enable us to refine its features to best meet the needs of our users.  The current version of JointPRO was launched in November 2013.  

 

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. On this page you will find your health record, which falls under three main headings - ‘About Me’, ‘Joint History’ ‘My Care’. You will also find your ‘Notifications’, ‘Incoming Requests’ and ‘Outgoing Invites’ (see below for more information).

Finally, and most importantly, you will see a large button displaying ‘Take a test’. On clicking this button, you will be guided 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’ ‘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.

Incoming Requests

-    Your doctor(s) is/are able send you a request to ask permission to monitor your progress on JointPRO. If you accept such a request, your doctor(s) will be able to view your profile – including your health record and scores, but will not be able to edit any of your details. 

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 free to take a test as often or as little as you like. Some patients find it helpful to keep track of their joint disorder from week to week, where as others chose to score themselves less often than this. Remember that the more often you score yourself, the more information your clinician has about your joint disorder to support well informed clinical decision-making. In the future, your information may also allow researchers to explore factors influencing clinical effectiveness, thus informing future treatment and improving patient outcomes. 

We consider it very important that you score yourself once before any treatment that you undergo, and then at 6 weeks, 3 months, 6 months and 1 year after your treatment. In addition, we ask that you score yourself annually for 6 years thereafter. You will receive email/text alerts to remind you to score yourself at these time points.

• 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 people to view your clinical profile, but only where you have expressly consented to such sharing:

-    Doctors (namely GPs and Consultants)

-    Other healthcare professionals who are assisting your Doctor with your clinical care (as verified by your Doctor)

-    If you are signed up to a specific academic/clinical study, the Academic Researchers who are involved in the study. These researchers will have access to your data in a psedonymised form (you will be distinguished via a unique ID number which does not reveal your “real world” identity). Only the Lead Investigator for the study will hold the key enabling this unique ID number to be linked to the Patient's name.

-    In addition, consented researchers here at Charing Cross Hospital may have access to your data in a psedonymised form. It is our hope that in collecting and analysing your data with similar data from other patients, we will be able to gauge which procedures result in the best outcomes, thus informing future treatment.

• Will my data be shared with any third parties?

No - not in the forseeable future. Somewhere further down the line, it is possible that your data may contribute to research on a wider scale, to enable surgeons to better understand what influences the success rate of operations from a patient’s perspective. It is hoped these learnings will feed into continued improvements in the treatment of patients like you. 

Please note that if we were to share your data with third party researchers (for the purpose described above), your information would be in anonymised form, thus you would not be identifiable. 

• 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?

For logistical reasons, we do ask that you register using 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. 

• How do I change my username?

To change your username, 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 username. 

• 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. If you would also like to withdraw your information from the data repository, please email Emily@jointpro.co.uk

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’.

 

HEALTHCARE PROFESSIONAL FAQS

• What does signing up with JointPRO involve on my part?

Creating an account with JointPRO is as simple as completing our online registration from, and sending us a copy of your GMC Registration Certificate as proof of identity.

• How do I access my patient’s PROs scores?

Firstly, your patients are able to name you as their doctor on registering with JointPRO, and permit you access to their profile. In this case, the patient’s record will appear under your Patient List on your profile and you will be able to access their PROs scores by clicking on their name.

If you would like to view PROs scores for a patient that is not listed in your patient list, you are able to search for their name in the search box at the top of your profile. If the patient in question is registered with JointPRO and has specified that their doctor works at the same GP practice or hospital that you have listed as your workplace, their name will appear in the search results and you are able to request access to their profile.  Alternatively, if their name does not appear in the search results, you are able to invite him/her to register with JointPRO.

• What PROs instruments form the overall PROs questionnaire?

Patients’ self-reported health will be evaluated using validated PROs instruments (Oxford Scores and EQ5D), in addition to a novel PROs instrument that has been developed in our lab. The latter is unique in allowing each patient’s personal aspirations to determine the success of otherwise of an intervention.  This heightens patient relevance and sensitivity, as well as eliminating the ceiling effect associated with traditional scoring systems.

• How do I invite patients to share their PROs scores with me?

You are able to invite patients to share their PROs scores with you if  a) they are registered with JointPRO and  b) they have named your place of work as their GP Practice or Hospital. You simply need to search for the names in the search bar (by surname), and click on ‘Invite’.

• What about the collection of PROs for varicose vein and hernia surgery?

At the moment JointPRO is for patients with hip and knee conditions but in the future we would like to extend our focus to a much wider range of treatments and conditions.

• What if my patients don’t have access to the internet or have difficulty using computers?

If your patient doesn’t have access to the internet, a carer or family member is able to register with JointPRO and complete the questionnaire on the patient’s behalf, as long as they are in the presence of the patient.

• Wouldn’t it be better to integrate JointPRO into an existing computer program?

Unfortunately this has not been possible, given the fragmented use of electronic patient record (EPR) systems across UK healthcare settings. However, we welcome proposals to integrate JointPRO with individual provider EPR/other systems. Please contact us for more information.

• Can I import or export data between JointPRO and other systems?

This may well be possible, please contact us for more information.

• Is JointPRO a profit-making entity?

We describe ourselves as a ‘social business’. JointPRO is currently non-profit making, but in due course it will be important to identify commercial opportunities to ensure JointPRO is financially sustainable – ensuring this valuable resource remains free of charge to all patients, healthcare professionals and academic researchers. 

 

RESEARCHER FAQS

• How do I set up a research account with JointPRO?

Simply enter your details into the registration fields on the JointPRO homepage and click ‘Register’. You will then be guided through a series of questions that will provide us with the information we need to set up a research account for you and your research team. The research account will be set up under the name of the Lead Investigator of your study.  We will need to contact your Lead Investigator directly to verify his/her identity.

• How do I go about registering with JointPRO under an existing research account?

Again, simply enter your details into the registration fields on the JointPRO homepage and click ‘Register’. You will then be asked whether your study is currently registered with JointPRO. On clicking ‘Yes’, you will be asked for your unique JointPRO study code. The Lead Investigator of your team was provided with this code on setting up your JointPRO research account. Any of your team members registered with JointPRO under this research account will have also been provided with this unique study code. If you are unable to obtain this study code, you will be asked a series of questions that will enable us to identify which JointPRO research account you wish to register under. The Lead Investigator of your study will need to verify your ID via their JointPRO profile before you will be able to access the corresponding research account.

• How can I recruit subjects to register with JointPRO under my research account?

All you need to do is provide your subjects with the unique study code for your research account and direct them to www.jointpro.co.uk. During the registration process, subjects will be prompted to enter in this unique study code and on successfully registering with JointPRO, they will be assigned to your research account.

• What data will I have access to?

You and your team members that have successfully registered with JointPRO under the research account set up for your study will have access to pseudonymised data for those subjects that have registered with JointPRO under this specific research account.

 

 

REFERENCES

¹ Devlin N.J., Appleby J. Getting the most out of PROMs. Kings Fund publication 2010.

² Black N. Patient Reported Outcome Measures could help transform healthcare. BMJ 2013

³ FDA 2006

⁴ Berwick D.M. Medical associations: guilds or leaders? BMJ 1997; 314: 1564