A team of researchers at the University of Salford have developed and are soon to begin testing MSKHUB.com, an online self-management hub for people with rheumatic and musculoskeletal conditions.

MSK Hub logo

The University of Salford project aims to explore how an internet-based platform and social media hub (called MSK Hub) can be used to provide instant self-help information and self-care support for people with rheumatic and musculoskeletal conditions, by understanding how people engage with online information and what difference it makes to their lives and self-management of their condition.

If you are interested in taking part in this project, the research team will ask you to complete an eligibility screening form and a reply form. Once they have received this, they will telephone you to discuss whether you fulfill the eligibility criteria. If you are eligible, and once you are in the study, you will be asked to take part in one or more aspects of this project, which will involve:

  • Creating an online, secure health record on the online platform using the electronic tools provided;
  • Complete an online questionnaires when joining the project, at three months, and at six months afterwards;
  • Use the online forum to report on your experiences of using the online platform;
  • Engage with the social media platforms (for example, follow MSKHub.com on Twitter and join the Facebook page);
  • Write a blog based on your personal experience of your condition [optional];
  • Take part in face-to-face or telephone interviews or in a focus group at the end of the study [optional].

Creating an online health record

Based on your condition, you will be offered a number of questionnaires to fill in to measure your health status. It should take about 10 to 20 minutes to complete these to gather information about your current health, and how you cope with your condition, physically and mentally. This will be repeated at 3 and 6 months.

The online forum

If you agree to participate, you will need to agree to engage with MSK Hub’s social media platforms on a minimum of a weekly basis – which may just be as simple as liking material or retweeting content. You will also need to make entries to an online forum about your overall experience with using the MSK Hub, your communication with other patients/healthcare professionals, how you found the information and the difference it made to you.

Blogging

This is an optional part of the study; therefore you will only partake in the blogging process if you are willing to share your personal experience of your condition, with specific reference to self-care. You can blog anonymously, under a pseudo name to protect your identity, if you wish to do so.

Interviews

It is completely up to you to decide whether you would like to take part in the interviews or a focus group at the end of your participation in this study. The interview will be held using a method that works best for you (such as over the telephone, using Skype, or face to face) and will last up to half an hour. The focus group will be held at the University of Salford, and will last up to an hour also.

During the interview / focus group, further information about your overall experience with the MSK Hub, your communication with other participants and healthcare professionals, and the difference this online platform made to your self-management will be discussed. Some aspects of your engagement with the MSK Hub will be explored in more detail to help the researchers inform the further development of the hub.

How much time will you have to spend on the project?

You will be required to engage with the MSK Hub at least 10 minutes per week to inform the discussions around the development of the online platform. You will have to spend a maximum of 30 minutes responding to the questionnaires at the start, at three months and at six months (approximately 1 hour 30 minutes in total). If you are involved in an interview, this should take no longer than half an hour. Again, if you have chosen to write a blog entry, this should not take you longer than an hour, depending on the length of your entry which will be completely up to you.

Want to get involved?

If you have any questions about the study, wish to discuss taking part or have any concerns, please contact Dr Yeliz Prior on y.prior@salford.ac.uk or call 0161 295 0211.

This study has been reviewed and given favorable opinion by the University of Salford Research Ethics Committee.

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Written by simonrstones

Simon Stones BSc (Hons) is an award-winning patient leader, advocate and researcher from Manchester in the UK, who was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. He is a passionate advocate and ambassador for people living with invisible illnesses, inspired and empowered by his own journey with arthritis, fibromyalgia, and inflammatory bowel disease since childhood. He is currently an Associate Fellow of the Royal Commonwealth Society, and a trustee of Fibromyalgia Action UK and RAiISE.

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