This information is designed to help you to understand and to use the MyQuOL-T process, to enable you to describe, record, share, and evaluate changes in your, or your child?s health and wellbeing.

The computer programme has been designed so that patients, or their families, can use language and descriptions that are meaningful to them to translate what they experience on a day-to-day basis into information that is more readily understood by health and social care professionals. The information that you enter is entirely under your control; there are no right and wrong answers, and you can chose to include as much or as little detail as you would like, and to share the resulting graphs with as many or as few people as you like.

When entering any information on the internet, there are no guarantees of absolute security or confidentiality. The programme has been designed to be password- protected, and no-one else can see your information without them being given permission by you. When initially exploring the feasibility of this project we asked many parents about their views on putting information on the internet, and they felt happy to proceed with our arrangements, but if your opinion differs please do contact us.

To use the website, you need to register with us. Registration and subsequent personal use of the website is entirely free of charge.

First time users should register via the log-in page. You will need a valid email address.

For members of the public (“Personal Users”):

To register as a personal user, put in a valid email address. This will be your user name. You will have the opportunity to create a password of your choosing (minimum 8 letters/numbers). You can change your password using the Change Password link in the top right hand corner of your screen.

We need a few details about you to contact you should you forget your password etc. We do not share these details with anyone.

There are also some additional completely optional questions seeking more detail about the individuals using MyQuality, to help us to improve our service and which could help health care researchers in the future. Any research use will only access anonymised data.

For health and social care professionals (“Practitioners”):

Register via the same login page, using your work-based email address, but click on the button that says Practitioner, and choose a password (minimum 8 letters/numbers).

Members of the public using this system will not be able to see your email address or email you directly via MyQuality, but the system can generate email alerts to prompt you to contact your patient/client in a timely manner.

For research/service evaluation/audit (“Researchers”):

If you would like to use MyQuality for patient-centred feedback in a project or study, please contact us to discuss your needs.

There is the facility within MyQuality for researchers to have an account which allows them access to anonymised data of participants of their registered study. However, we would like to work with you to personalise any data retrieval and feedback requirements. Depending on requirements, there would normally be a charge for this service, which will vary with the size and complexity of the study. MyQuality Ltd would need to be included in the acknowledgements in any presentations of results. Contact [email protected] for further information.

This tool is designed to recognise that everyone is unique and will face their own challenges when faced with significant health problems.

Identify your priorities for your quality of life

If you are using this tool about yourself, consider some of the following questions:

• What is it that stops me from doing what I want to do today?
• If I could make one thing better today, what would it be?
• What is most affecting the quality of my life at the moment?
• What symptoms are bothering me the most?

If you are using this tool for a family member rather than yourself, consider what it is that stops them from having a good day today, or doing what they would most enjoy or add quality to their life. The answer might be something that relates to the whole family, not just the person with the health concern, but that is just as important if it is ultimately having an impact on quality of life.

Setting up your priority or symptom scales

Having thought about what matters most to you, or your family, click on “Priorities” on the blue column on the left. This will take you to a page to identify your priorities. If you are not sure where to start, there are drop-down lists of common physical symptoms and emotional and social issues, but you can also write your own description of your key concern in the “make your own” box. There is no limit to the number of priorities you can specify, but it is recommended that you try to prioritise your answers to the “top 3 or 4” problems or concerns. When defining these, try to think of them in the SMART context:

• Specific – define or describe in some detail
• Measurable – can you tell what makes a good day or a bad day with respect to this?
• Alterable – eg treatment or support is hoping to make a change to this symptom
• Realistic – some things cannot be cured, but many can be helped
• Time-limited – what might change on a day-to-day or week-to-week basis

Once you have inserted text to describe your own priority or symptom, or clicked on one from the drop-down list, you will be taken to another screen to describe it in more detail. The computer programme gives you the opportunity to describe a good day, or a bad day, in more detail, and score it out of 10 – it automatically defaults to low = 0, and high = 10, but you can change these figures if you wish by clicking on the square with the number in it and inserting another number (within the range -20 to +20).

There are smiley faces that go with the scales; these can get happier or unhappier with the changing scores – adjust the way they reflect your scores if necessary with the “reverse” button. If you are a parent with a young child who finds it easier to use pictures than numbers, this will help your child to tell you how he/she is feeling.

You can change or delete symptoms as required using the “trash” icon beside the name of the symptom.

Further down this page is a section called “landmarks” to define the numerical scales. Here you can put in a description of what would make a score of say 3, or 7, or anything between your top and bottom score. These descriptions will remind you how to score things over time. You can either use our existing scale (none, mild, moderate, severe, overwhelming), or use your own words to describe how this problem makes you feel, so that measuring your scores is relevant and personal to you. Repeat this process for each priority that you have identified.

Daily Check-in

Once you have identified your priorities, you will be taken directly to the “check-in” page when you log on.

The priorities and symptoms you have described will be listed, alongside a sliding bar scale. On the right you will see the descriptions that you created for given points along the scale. Move the button on the bar to represent how things feel today. Repeat this for each priority on the list. If you need to add a diary comment (eg feeling very tired today, or started new medicine today, etc) type this into the comments box at the bottom. Press “Check-in” at the bottom of the page to save your readings.

If you want to put in readings from a previous day or week, click on the date box at the top and select the date required. Continue as above, and check-in at the bottom of the page to save your data.

If you want to change a previous entry, select the date, move the bars to your new setting, and press the check-in again. This will replace the previous input with your new data.

View your Progress

Click on the charts heading, top right of screen
The graph of all your priorities and symptoms will appear.
To look at just one or two symptoms on their own, untick the boxes beside the other symptoms
To look at changes over a specific time period, change the date settings by clicking on the date boxes.

Share My Information

Click on my account, top right of screen, and follow the drop-down box and click on "Sharing". You will be taken to a new page, headed Patient Sharing.

Professionals who are registered with the system will be listed under Available Practitioners. To enable an individual professional to see your information, click on the green cross to add them to your list. The name of that professional should then appear on the list of "Practitioners I’m sharing with". To remove them, click on the red minus sign.

Professionals cannot enter data on your behalf, or change your data. They can see your charts, and add comments to the diary section, which will be identified as “practitioner comment” and appear in your timeline.

In addition to allowing members of your professional team to view your graphs, you may feel that for a specific symptom or priority, it would be useful to alert them directly should things suddenly get much worse. This can happen automatically should you choose, as long as the identified professional agrees. The process is outlined in the following example.

You are troubled by pain, and identify that as your priority, and you are sharing your graphs with your specialist nurse. Together you discuss when it would be sensible to intervene and change treatment – for instance, if the pain level was 7 or higher on your scale. On the My Priorities page, there is a section to identify the value at which someone should be notified, and a drop-down list of the chosen professionals that you are sharing with. Select the appropriate person (in this case your hospice nurse) and put the value 7 in the notification box. Please note, this option is not available if you wish to keep your graphs private, it is only possible after you have identified a professional with whom to share your information.

When the professional logs into the system, your name will appear on their list, with an email icon next to it – they should tick this icon to confirm that they are willing to receive email notification of this symptom. You will need to repeat this individually for each priority you have identified, as it may be that different professionals will need to be notified in each case (eg neurology for fits, rheumatology for joint problems, hospice for pain, community nurse for feeding difficulties, etc)

The email that goes to the identified professional will state:

“This email has been sent to you because (patient name) has checked in with some symptoms outside the normal values. Priority X (symptom or name of priority) checked in at 9.3 which is higher than the threshold value of X (previously agreed threshold for notification)”

It should prompt them to contact you sooner rather than later, but please do not use this system to replace other methods of obtaining advice in an emergency.

Once you have registered, MyQuality will generate a list of individuals who have chosen to share their information with you.

Click "View" after the patient’s name, and their graphs will appear. To see the relevant scales for each symptom, hover over the "i" icon.

The graphs will show all priority scores; to view just some priorities or symptoms, click on the legend symbol to remove individual priorities from view. Alternatively, under advanced settings, you can select specific priorities for graphic display.

To view a selected timescale, put in desired dates and the graph will refresh automatically.

You cannot add or amend data, but can put in comments to annotate the graphs with any change of circumstances (eg change of medication dose, or introduction of a new intervention).

There is also the facility within this system to generate email alerts when particular symptoms or priorities exceed a pre-agreed threshold. If your patient/client has asked that you be alerted for a specific issue, an email icon will appear next to their name; tick this to make it green to receive these notifications. For instance, if you are managing someone’s pain and the level is 7/10 or greater, an automatic email will be sent to you saying:

“This email has been sent to you because (patient name) has checked in with some symptoms outside the normal values. Symptom “pain” checked in at 8.3 which is higher than the threshold value of 7.00”

Your patient will not be told your email address, and it will be up to you to make contact at a time and a method of your choosing.

If you feel that you do not wish to receive these notifications, untick the icon to make it red, but please contact your patient to make sure that they know where to seek additional advice.

MyQuality does not replace other methods of communication, but the email alert facility may ensure that you are more able to appropriately prioritise the concerns of your caseload, and respond in a timely manner. Please ensure that any other necessary routes for seeking urgent advice remain available to your patients/clients.