The Cambridgeshire regional support group of the British Sjӧgren’s Syndrome Association contacted the Patient Led Research Hub in February 2017 with a wide range of research ideas important to the daily quality of life for patients with Sjögren’s Syndrome. Discussion with patient groups and rheumatologists revealed the need for an online resource to enable patient led and patient-centred research projects. This safe, secure ‘patient portal’ will enable interested patients to create a profile, log and track symptoms and medications or supplements, and access educational resources. Patients wishing to partake in approved research projects will able to input their own data (e.g. food diaries or the results of simple home-based tests) in a separate, anonymous and encrypted section of the portal. The portal will encourage patients, medical and academic experts to work together in equal partnership to progress Sjӧgren’s Syndrome research important to patients."
You can see us on their new plrh website: plrh.org
Laura has also outlined the next steps for us, she says:
"I met with two of the clinical trials unit (CTU) database programmers who have advised that the easiest place to begin is to find websites that we like the look of and find easy to navigate and interact with. The websites can be about anything – content is not important – but they can use the layout as a template to develop the portal.
Perhaps interested members of the patient group could each find and share a few preferred websites. We could arrange a meeting to discuss the websites, narrow the list down to 3 options (or a combination thereof), and make a list of the likes/dislikes. The programmers can review and add their own input about which they think would be most suitable for the portal considering available time and funding.
They also need to know (this can be developed over time; I’ve included a few examples but it’s really up to the group):
1. What do you want the portal to do?
-allow me to interact with my own data (display personalised information to help track symptoms/clinical tests/activities/diet and how they interact with each other)
-link me with ongoing research in Sjogren’s Syndrome
-list available resources/information/groups so I can learn more about Sjogren’s Syndrome
2. What information do you want the portal to collect (separate to the clinical trial section)?
-quality of life measures that I input
-daily/monthly symptoms that I input
-medication tracker that I input
-clinical test results updated automatically from NHS services
-my research interests & personal details so researchers can contact me about new studies
3. How do you want to interact with the information (ie how should it be displayed)?
-graphs, charts, symbols, pictures
-receive notifications or emails about new information/trials, summary of your own data, etc
4. What do you want the structure to be?
-a homepage with information and log-in button (perhaps helpful for new patients)
-what information to keep outside of secure log-in
-directly to log-in only
I realise this task is a bit overwhelming. It may be helpful to review some existing patient databases:
PatientsLikeMe is an American website which allows patients to connect to others with similar diagnoses or symptoms. You can enter your own data and participate in forums, but there is no medical oversight or expertise. It’s free to register if you want to make a dummy account to see what it’s like (Sjogren’s is a listed condition). The catch is that the website anonymises the data that users input and sells it for profit to industry.
PatientView is a UK website designed to link patients with their clinical test results, results can be shared, and you can contact clinicians. You have to be a patient at a registered site (most are) for the website to be able to receive the data, but many patients find it a very useful tool. Some clinical trials already connect to PatientView." Laura.
So please give the above some thought and we'll meet in the new year (date to be announced) to discuss it. We welcome your views if you are unable to attend meetings, you are still part of our group! If you have any questions do email us or contact Laura at email@example.com.
Launch of Research Project
The Cambridge group of the British Sjögren’s Syndrome Association (BSSA Cambridge) is working on a patient-led research project to see if supplementing your diet can reduce symptoms of dry eye, dry mouth and fatigue. This survey will help establish some basic information to plan and guide the study design; the results are anonymous. Your time and feedback are greatly appreciated.
The Patient Led Research Hub (PLRH) at the Cambridge Clinical Trials Unit is helping to support BSSA Cambridge develop their research idea. This study will be designed to be pragmatic, simple and easy to participate from home. If you wish to be involved in the study, or would like more information about the PLRH, please contact:
Laura Mader, PLRH Project Manager
It is great news to record a patient led Sjogrens Syndrome research project from the UK. Especially is it is a home based roject, we would like to encourage you to join us in this important project, links to the two online survey forms are shown at the bottom of this page - Editor
Links to Survey Documents related to this Sjogrens Syndrome research project on diet supplimentation
Developing an online Sjögren’s Syndrome ‘Patient Portal’
Research studies collect data on patients to help researchers answer questions about treatments or symptoms. Usually, information collected in studies is not visible to participants during the study.
The PLRH is considering a new concept where data collection is truly interactive and patient led. For example, participants could choose to register and maintain a private online profile page, creating a personal database. Participants could enter their own data on diagnosis, symptoms, and treatment; the data would be held securely and remain accessible to the participant in a user-friendly format.
Initially, the PLRH team could help enter data, but participants would have to maintain and update their personal pages. A simple version of this ‘Patient Portal’ could be used to run the BSSA Cambridge study on diet supplementation.
The Patient Portal could encourage participants to better engage with their health information, and could build patient forums and support networks. Your input on the use and value of a Patient Portal is a critical starting point.
Thank you for your time and feedback.
Link to Patient Portal