A new online self-management tool for rheumatoid arthritis (RA) patients is making its debut following a lengthy and detailed collaboration between patients, health care professionals and researchers.

Dr. Diane Lacaille, a senior scientist at the Arthritis Research Centre of Canada, recently launched the “Arthritis Health Journal” — an online tool that will enable RA patients to be actively involved in monitoring their symptoms and disease activity. This fabulous tool is the result of a “match made in heaven”– a collaboration between patients, rheumatologists, arthritis health professionals, and information technology experts. The collaboration resulted in a design that will best assist patients and rheumatologists in developing action plans to better manage rheumatoid arthritis and improve health outcomes.

How did the project start?

Patient passports and health journals have been used in chronic diseases to promote active involvement of patients in their care, and have led to better treatment and health outcomes. Rheumatoid arthritis was identified as a disease that would benefit from this type of tool. During the development stages both patients and rheumatologists were interviewed; they provided important insights into the value of an arthritis health journal and how it could be used to improve care. Patients identified the potential benefits of increased self-awareness, better self-management, and improved timing of rheumatologists’ visits.  Rheumatologists felt that having RA patients actively involved in recording concise data and concerns would result in more focused care.

The solution?   

The “dream team” of researchers, health professionals and patients made their idea a reality when they partnered with Microsoft Canada and Telus Health Space to create a secure environment to store personal health information. They contracted with the Habanero Consulting Group to design a stylish and easy to use platform. In addition, they collaborated with the Information Management Information Technology Services (IMITS) of the Provincial Health Services Authority of BC, who volunteered hundreds of hours to turn the team’s vision into a fully functioning online tool.

The result?

The Arthritis Health Journal consisting of six sections:

“So my expectation is certainly that patients will call me, and they normally do if they aren’t doing well, if you can give them some more alerts, ’cause clearly for every patient who calls, there’s somebody else who’s toughing it out ’cause they’re not…appropriately aware…of the fact that their disease is misbehaving.” (Dr. Osler)

1. Symptom and Exercise Log
2. Disease Activity Assessment
3. Mood Assessment
4. Medical Information
5. Goals and Actions Plans
6. Health Reports

Why is the tool so important for RA patients and how will it be used to improve care?

This tool is a natural fit for RA patients because it will accommodate early and aggressive treatment and the “TREAT TO TARGET” approach, which involves escalating treatment until the target (little or no inflammation) is met , and  modifying treatment  when this  target is no longer met. RA needs to be treated early and aggressively in order to achieve the best long-term health outcomes and prevent bone and joint damage. If patients can self-monitor their own disease activity, they can provide their health care team with early warnings when targets are not being met, this facilitating the Treat to Target approach.

“Well if I could get a little chart that looked like this that kind of gave me an overview…then it wold show me week to week how things are changing…you don’t pay so much attention so you don’t realize that it’s worse than it was a year ago, you know you just kind of get used to it.” (Elizabeth)

The Arthritis Health Journal is currently in the pilot stage of study. The pilot test will assess the success of patients in tracking their disease activity, the level of satisfaction with the journal, and how the use of the journal influences the process of care.  For instance, the patient will be able to track disease activity where trends indicating, “remission, low disease activity, moderate disease activity or high disease activity” can be easily identified (see table below).

Using this tool, RA patients will be able to assess their disease activity, clearly view results (displayed as remission, low, moderate, or high disease activity), and identify patterns over time. By promoting timeliness of visits to rheumatologists and more accurate information to be shared with rheumatologists, overall disease management should ultimately improve resulting in better outcomes for both RA patients and the health care system.

We are very excited about this new online resource for RA patients.  We feel that this tool will empower patients to become active participants in their care in a collaborative manner with their health care team.  Knowledge is power, and having charts and documentation that can help identify disease activity, mood, fatigue levels and goals is the POWER we need to take the “guess work” out of “How are you doing?”!!!!!