Resources that use clinical, design and technical expertise to improve the experience of monitoring MS. For people with MS, their families and their medical teams.
Clinicspeak.com is a website with a number of tools to help monitor a person’s MS. It informs those affected by MS and the people who work with, and care for them.
Clinic Speak develops resources to self-monitor because we believe if you don’t measure something you can’t change it.
Self-monitoring demonstrates to those with stable or improving conditions that their current treatment is working. Their treatment decisions are reinforced and they know adherence is essential to maintain their current status.
If their condition is worsening, more effective treatment options can be explored and positive, healthier lifestyle changes can be adopted. It may also make them eligible to join a clinical trial.
What does Clinic Speak want to achieve?
We want Clinic Speak to change the way people view their condition and their treatment plans, and to change the relationship between them and their health teams.
Our goal is to enable pwMS and their families to feel more empowered and in control of their medical care. To change them from passive patients to active drivers in the management of their own condition. We believe this empowerment will not only improve their condition through better adherence and more close monitoring of progression, but also improve their mental health by taking away some of the feelings of helplessness and lack of control often present in a chronic condition.
What is currently available?
- MS outcomes (including EDSS): Calculate, track and understand your MS disease status using three metrics: Expanded Disability Status Scale (EDSS), 9 hole peg test and Timed 25ft Walk.
- 9 hole peg test: The 9 hole peg test measures arm and hand function in clinical trials across the world. Our take-home version enables patients to test and monitor their limb function independently. Self-monitoring gives people a measure of control over their lives. It keeps individuals and their medical teams informed about the status of their condition, enabling a swift response if necessary.
- Timed 25ft Walk: The timed 25ft walk is a simple tool that enables people with MS and their medical teams to monitor their lower limb function. Using a piece of string and following a few clear rules, people can keep a record of their results online. This record can inform treatment decisions, exercise programmes and wider choices made by individuals, based on their ability to walk.
- Understanding your risk of PML on Tysabri: An overview of the benefits and risks of Tysabri, allowing you to calculate your risk.
- The lumbar puncture procedure: What to expect before, during and after your lumbar puncture procedure.
- Under & Over: Under & Over is a new hand and arm rehabilitation tool, and home-based training programme, for people with MS. It consists of a grid, two coloured laces and a book of instructions.
- Alemtuzumab safety advice: Listeriosis prevention: How to prevent listeriosis before, during and after treatment.
How can I get involved?
Clinic Speak is no exception to our rule of active involvement of pwMS. We seek your feedback at every stage of developing and rolling out our new resources.
Use this blog to comment upon Clinic Speak resources, or contact us to give us your feedback.
We involve pwMS at every stage of developing a new resource. Alison Thomson, designer of the Clinic Speak resources, explains that it’s part of an “open design process. We ask at every stage if its working, test it very quickly and make sure that people can use it.”