Patient involvement in research
The voice of patients is becoming more and more important in all European countries. Health providers who want to improve quality of care include patients to ensure that new interventions address patients' needs and concerns. Also reseachers are increasingly encouraged to actively engage patients in the design and conduct of clinical studies. Patients have unique knowledge of the impact of their disease in daily life. That knowledge is another rich source for scientific research that we call "experiential knowledge".
This patient expertise is complementary to the expert knowledge of health professionals, knowledge that is often referred to as “evidence based knowledge". Patient involvement in research aims to reconcile the knowledge and perspectives of patients with that of health professionals. It enhances the relevance, quality and applicability of research findings for the people who have the disease. For this reason Tools2use (“Tools”) supports GLORIA to ensure the voice of people with rheumatoid arthritis is integrated throughout the trial.
Tools is an association that works with patient partners in scientific research. To stimulate cooperation between patients and professionals, Tools provides education and communication on patient participation. Tools works mainly in the field of Rheumatoid Arthritis, as well with other conditions such as other rheumatic conditions (Sjögren disease, lupus, osteoarthritis), cancer, psoriasis, kidney diseases, cardiovascular diseases and mental illnesses. Therefore, Tools has experience and will actively participate in all matters concerning patient-involvement in the Gloria trial. Both Tools-founders are known to achieve high standard results regarding patient participation in research (EULAR, PARE, OMERACT, T2T).
Maarten De Wit, PhD on patient-participation, is former Vice-president of PARE and founder of Tools. Marieke Voshaar, MSc, is founder of Tools, and involved in a Phd study on adherence in rheumatology. They are both connected to many projects with regard to patient empowerment and participation, quality indicators, development of guidelines and scientific evaluation of research in rheumatology. They will warrant that the needs of the patients will be addressed in this study, aiming at improving quality of life for patients, and dissemination of GLORIA results after ending of the project. To consult and integrate the perspective of patients in GLORIA, the following methods will/can be used:
1. Advisory Patient Panel
The set-up of an advisory panel for the GLORIA trial. The patients participating in this panel are not necessarily part of the trial itself, these patients have had an education or experience in how to participate in scientific research. This panel can assist in:
- Translating the research topic, the aim, the process and the results in their own national languages and in lay language, which can be valuable to disseminate the information to patient organisations as well.
- Recruiting patients, by contacting their national patient magazines and maybe other media before the trial starts, to give information about the upcoming trial.
- Functioning as a board to help the national coordinators who are in the lead of the trial in each country, since it might be easier to approach a fellow patient partner than a professional in need for information, complaints or suggestions. If this is the case, the patient partner should always share and discuss the incoming information with the national coordinater.
2. Patient Surveys
For the GLORIA trial, a survey will be offered to patients; they can give information about barriers and facilitators with regard to participation in a clinical trial. In the GLORIA trial, this survey will be send to patients already included in the trial. By learning from these experiences, trials can improve in the future with regard to recruitment and retention. It will be interesting to see if the information given by the patients will differ between the 8 participating countries.
Examples of answers may be that there is a need for understandable information about the risk/benefit balance with regard to the medication, about the trial and/or the burden for the patient such as extra hospital visits, bloodtests etc, prelimary and end results, and more practical issues such as where to go when you have problems concerning the trial, the doctor, or the effects of the medication. Normally this information should already be known by the patient, because in the recruitment process, the patient should have received this information at the start, but it may be benificial to repeat some facts to keep the patient involved.
Communication and dissemination of results
What can we do to keep patients interested, active, adherent and happy to participate in the trial? The patients should know that the effort and time they offer, is really appreciated and of great value for the trial. This knowledge can be shared by sending regular updates in newsletters, in lay language and through different channels, such as articles in patient magazines, emails, forums, and when they are on site in the hospital. Important is that patients receive information in lay language, before, during and after the trial. Appreciation can be shown by sending the results of the trial in lay language. When patients know the results of the trial, this can also stimulate dissemination of these results. Dissemination of the results will enhance improved guidelines and more knowledge of the content of the guidelines by patients, who are ultimately the persons who need to benefit from the results of this trail.
For more information please check our patient folders below, available in the following languages:
Or check our information videos for patients here!
Maarten Boers, Prof. Dr.: email@example.com
Leonie Middelink, MSc: firstname.lastname@example.org