Accessing treatment in development for patients living with chronic pain
FindMeCure Foundation and Chronic Pain Ireland together with the support of IAPO organized a webinar which aimed to unravel the process of mobilizing action towards helping patients living with chronic pain access treatments in development.Through an interview, Maya representing FindMeCure Foundation and Deirdre representing Chronic Pain Ireland they unravel the genesis of this collaboration as well as the intended outcomes of this webinar.
1. How and why did FindMeCure and Chronic Pain Ireland come together to start this collaboration?
Maya: It all started with the first webinar we organized together with IAPO as a part of the Patient Solidarity Day celebrations in December 2017. After the webinar, we received very positive feedback from the National Coordinator of Chronic Pain Ireland who also took part. As there were some questions from patients living with chronic pain and willingness for more webinars telling about new treatments for chronic pain, she asked whether it is possible for us to organize a dedicated webinar on this topic. This is how the idea for this webinar series arose. Since then, there have been continued conversations between FindMeCure Foundation and CPI on how we can best help patients together. Additionally, this is also how the widget came into place - it’s a great tool for patients and caregivers to easily find and apply for clinical trials exploring innovative therapies.
Deirdre: I jumped at the opportunity to participate in the webinar as the one in December 2017 had been so informative and it was clear that our CPI members are curious about this area. From interacting with other patient groups on joining the governing body at CPI, I hear over and over how important patient input is in research and treatment plans. This webinar was an opportunity to enable patients to do just that!
2. Why did you decide to bring IAPO into this initiative?
Maya: FindMeCure Foundation has been a member of IAPO since 2016. Since then we have been receiving great support and advice from the team as they have invaluable expertise and presence worldwide. We knew that clinical trial information is not very popular among patients and caregivers so we needed a supporter to join our mission and help us raise awareness worldwide. We are extremely thankful to IAPO for their help and believe we can jointly bring Patient Empowerment through knowledge. After all, it all comes down to the patient so if we can help at least one patient with our work, it would all be worthy. And we believe that no effective results can happen if there is no collaboration and joint efforts.
3. From an organizational view, what benefits are you getting from joining efforts?
Maya: We get to see more informed people who can take their own decisions regarding their health! Clinical trial awareness is lacking in many ways and we are working hard to change this. People need to know how to access credible information from all the tons of information on the web and of course how to benefit from it. Our organization aims to help both patients and pharmaceutical industry in order to speed-up the drug development process and thus bring new therapies on the market sooner. People should know, however, that innovation cannot happen without patient involvement and we should use all channels and efforts to inform and educate them.
Deirdre: At CPI we honor our commitment to interacting with all the key stakeholders on behalf of our members. Whether pharmaceutical companies, government bodies, health practitioners and other patient groups. The benefits are twofold: The organization has the opportunity to see the work other groups are contributing and supporting each other through collaboration. The other benefit is for the members to be well represented and hear the latest developments within the patient community as a whole.
4. How do you see patients living with chronic pain benefiting from the collaboration between FindMeCure and Chronic Pain Ireland?
Maya: They can now learn that current treatments are not their only option and people from Ireland can now find the nearest trial for their condition and get connected to the medical team running the trial of interest. There are so many chronic pain-related conditions and many people around the world suffering each day who should know that the pharmaceutical industry is working on finding new solutions that they should take part in. This partnership and collaboration is not a one-time event, but a continuous process as technology and innovation progresses.
Deirdre: At the bare minimum patients, hopefully, can feel included and part of an international community striving to manage chronic pain. Chronic pain can be very isolating and knowledge of current trials into new treatments offers patients a glimmer of hope. At best, patients can participate in such clinical trials to contribute to the body of evidence on treatments for their condition, leading to new treatment options.
5. What is the present situation of how clinical trials are engaging patients living with chronic pain?
Maya: I can’t say that clinical trials are doing a good job engaging patients living with chronic pain. There is definitely lack of information that ordinary people can understand. The greatest hurdle though is when you try to contact a trial coordinator to learn more about the study. It takes a huge amount of effort and time. Once you find the right person, you unsure of what to expect coupled with the study staff who might be quite skeptical about having you on board, as they need to put extra efforts in identifying whether you are eligible for the study or not. The quickest way to be a part of a study is if your doctor is already involved in the study. However, patients can now leverage the support of Chronic Pain Ireland because the tool on their website provides clinical trial information and guidance in multiple locations and conditions.
Deirdre: I believe there are many misconceptions within the patient community of what a clinical trial is. For example, many patients think there are only drug trials funded by pharmaceutical companies available. As a vulnerable group, it is difficult for certain companies or universities to gain access to chronic pain patients. Unfortunately, this means that the information about trials or the final results often don’t reach the patients that wish to keep informed. Another stumbling block is the fact that chronic pain is not a disease in its own right, yet. Therefore many patients don’t receive a clear diagnosis and are thus unable to seek for specific treatment options. At no point in my own journey with chronic pain has a specialist or other healthcare practitioner suggested I consider a clinical trial.
It was great to hear Maya give such an accessible overview of FindMeCure and clinical trials, especially who is involved and the different stages of a trial. Lot’s more questions are out there to be addressed which we will attend to in the next webinar.
6.Do you have any plans for the future that you would like to share with patients living with chronic pain?
Maya: We plan to continue the series of webinars for the Chronic Pain Ireland patient community so stay tuned! We will be sharing more information soon. We want to invite patients and caregivers to propose topics or ask questions related to clinical trials to ensure we cover this information in our future webinars. We started with a basic webinar that acted as a foundation but plan to delve deep into more specific topics depending on what patients need to know.
I am also pleased to share that we will be organizing a webinar in cooperation with the American Chronic Pain Association, an IAPO member whose CEO is an IAPO board member. It will be a significant opportunity for patients in the United States to learn about clinical trials being a treatment option and how to find a suitable one for their condition. We invite patient community representatives to get in touch with us in case they would like to join our mission and partner with us.