Drug Safety Matters
Drug Safety Matters brings you the best stories from the world of pharmacovigilance. Through in-depth interviews with our guests, we cover new research and trends, and explore the most pressing issues in medicines safety today. Produced by Uppsala Monitoring Centre, the WHO Collaborating Centre for International Drug Monitoring.
The views and opinions expressed in the podcast are those of the hosts and guests respectively and, unless otherwise stated, do not represent the position of any institution to which they are affiliated.
Drug Safety Matters
Uppsala Reports Long Reads – Empowering patients as partners
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A patient's perspective can ensure safe medical care and lead to new insights that traditional research may overlook. But how do we best harness that perspective to improve patient outcomes?
This episode is part of the Uppsala Reports Long Reads series – the most topical stories from UMC’s pharmacovigilance news site, brought to you in audio format. Find the original article here.
After the read, we speak to Manal Younus, who authored the article, to learn more about patient engagement and its benefits for medicines safety.
Tune in to find out:
- How regulators and healthcare professionals can effectively engage patients
- How patients can get involved in drug safety monitoring
- What the pharmacovigilance community learned from the valproate case
Want to know more?
In 2022, the Council for International Organizations of Medical Sciences (CIOMS) published a comprehensive report on patient involvement in the development, regulation and safe use of medicines. They also recorded a webinar to summarise the report’s main conclusions.
The International Society of Pharmacovigilance (ISoP) runs a patient engagement group to advance patient involvement in the safety monitoring of medicines.
The Valproate toolkit, developed by the UK’s Medicines and Healthcare Products Regulatory Agency (MHRA), supports healthcare professionals in advising women of childbearing age about the risks and benefits of valproate therapy.
PatientsLikeMe is a digital platform where patients can share personal health stories, connect to peers, and learn about different conditions and treatments.
For more on patient engagement and communication, check out these episodes from the Drug Safety Matters archive:
Finally, don’t forget to subscribe to the monthly Uppsala Reports newsletter for free regular updates from the world of pharmacovigilance.
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About UMC
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Intro
Federica Santoropatient's perspective is powerful in ensuring safe medical care. Yet, how may we best harness their perspective to improve patient outcomes? My name is Federica Santoro, and this is Drug Safety Matters, a podcast by Uppsala Monitoring Center, where we explore current issues in pharmacovigilance and patient safety. This episode is part of the Uppsala Reports Long Reads series, where we select the most topical stories from our news site, Uppsala Reports, and bring them to you in audio format. Today's article is Empowering Patients as Partners. Patient Engagement in Healthcare. Written by Manal Yunus and published online in June 2023. After the read, I sit down with Manal to learn more about patient engagement. So make sure you stay tuned until the end. But first, let's hear the article. Read by Uppsala Reports Editor Alexandra Courtino.
Article read
AlexandraNo longer mere recipients of medical care, patients are now recognized as valuable partners in the development, regulation, and safe use of medicines. This shift marks a fundamental change in the healthcare landscape, acknowledging the importance of incorporating patient perspectives and experiences. This article explores the concept of patient engagement, its importance, and the compelling case of Velproate to illustrate the need for active patient involvement in healthcare decision making. The development, regulation, and safe use of medicines are complex processes that involve numerous stakeholders, including patients, healthcare providers, regulators, and pharmaceutical companies. Patient engagement in these processes is essential to ensuring that the interests and needs of patients are considered at every stage of the process. Patient engagement involves actively involving patients and their representatives in healthcare decision-making processes. It recognizes that patients possess unique insights into their conditions, treatment outcomes, and quality of life. By actively including patients in every step of drug development and post-marketing surveillance, healthcare stakeholders can harness this wealth of knowledge to improve patient outcomes. For example, in clinical trials, patient involvement helps ensure that trials are designed in a way that is relevant and meaningful to them. Patients can also provide input on the development of patient-reported outcomes measures, which are used to assess the impact of treatments on their quality of life. Patient engagement in the regulation of medicines is also critical to ensuring that the process is transparent and that patients' needs are considered. They may further provide input on the labeling and packaging of medicines to make medical information easier to understand for other users. Their value even extends to the safe use of medicines, where they may be involved in developing educational materials about medications to provide patients access to accurate and up-to-date information about their treatments. Patients may also be involved in the development of adverse event reporting systems, helping to ensure that adverse events are reported in a timely and accurate manner. By involving patients in these key processes, healthcare interventions address the needs, preferences, and priorities of the individuals they are intended to serve. Patients bring a personal perspective and insights that traditional research may overlook. By involving patients in decision making, healthcare systems become more patient-centered and foster a sense of ownership and empowerment among patients. Patient engagement enhances transparency and trust between patients, healthcare providers, regulators, and pharmaceutical companies. When patients are engaged, they feel heard and respected, leading to increased adherence to treatment plans and better health outcomes. One notable example of patient engagement's impact is the case of vulproit, a medication used primarily for the treatment of epilepsy and bipolar disorder. In the past, vulproate has been associated with severe birth defects if taken during pregnancy. Unfortunately, many women were not adequately informed of this risk. However, through patient engagement initiatives exemplified by patient testimonies at a public hearing on the drug, the voices of affected individuals and advocacy groups were heard and considered by regulatory authorities. The information and testimony shared during the public hearing influenced how the European Medicines Agency assessed the risk-benefit profile of Valproate, as well as their recommendations regarding the use, labeling, and risk minimization measures for the drug. Patient advocacy groups, such as the Independent Medicines and Medical Devices Safety Review in the United Kingdom, played a pivotal role in drawing attention to this issue. They raised awareness about the risks associated with vulproit during pregnancy and provided further advice and support to affected women and their families. The involvement of these patient groups prompted regulatory bodies and pharmaceutical companies to act, leading to improved warnings, strengthened regulations, and enhanced patient safety measures in the use of vulproites. The Velproate Toolkit, developed by the Medicines and Healthcare Products Regulatory Agency, MHRA, in collaboration with patient groups, is another example of patient engagement in action. This resource provides comprehensive information and tools to support healthcare professionals in advising women of childbearing age about the risks and benefits of vapproate therapy. The MHRA and EMA have also engaged with patient advocacy groups and organizations to gather patient experiences and perspectives. They have conducted surveys and consultations to better understand the impact of vapproate on patients' lives and to identify areas where additional support and information are needed. These efforts have helped increase awareness among patients and healthcare professionals about the risks associated with vulproit. Patients are now better informed about the need to use effective contraception while taking vulproites and the importance of regular reviews of treatment options. Furthermore, the EMA and MHRA have actively promoted shared decision making between patients and healthcare professionals so that patients may make informed choices about their treatment. Patient engagement has emerged as a crucial driver of progress in healthcare. Recognizing patients as partners in decision-making processes has the potential to transform the way medicines are developed, regulated, and used. The case of Valproate highlights the importance of patient engagement in addressing healthcare challenges and improving patient safety. The active involvement of patients, healthcare providers, regulators, and pharmaceutical companies fosters a more patient-centered approach, builds trust, and ultimately enhances patient outcomes. Embracing patient engagement is not only an ethical imperative, but a practical necessity to shape a healthcare system that truly meets the needs and aspirations of those it serves.
Welcome, Manal!
Federica SantoroManal is the head of the Iraqi Pharmacovigilance Center at the Ministry of Health, and an executive committee member at SIOMS, the Council for International Organizations of Medical Sciences. She's also very involved with ISO, the International Society of Pharmacovigilance, where she serves as advisory board member, student group leader, co-chair of the special interest group on patient engagement, and vice president of the Middle East chapter. As if that weren't enough, she's now also pursuing a fellowship with the Patient Safety Movement Foundation. Manal is incredibly passionate about patient engagement, and I hope our conversation will inspire you too. Hi Manal and welcome to Drug Safety Matters. I really enjoyed reading your article on patient engagement, so I'm delighted that you could make it on the show to tell us a little bit more about this interesting topic. How are you doing?
SPEAKER_01Thank you so much. Doing great. Thank
History of patient engagement
SPEAKER_01you.
Federica SantoroSo I'd like to start with a little bit of history. In the article, you call patient engagement a transformative concept, and it truly is. If you think about it, not that long ago, a paternalistic approach to healthcare was sort of the rule where the doctor is considered the expert, that's the person who knows best, and the patient should just follow instructions, not ask too many questions. But over the years, it seems like we moved away from that to a more inclusive approach to healthcare, where patients are also considered experts because they're the ones living with the disease, after all. So when did that transformation happen and what brought it about?
SPEAKER_01Indeed, it was a progressive way, a gradual process that has evolved over several decades. And this change has been driven by various factors, including changes in societal attitudes, advances in medical knowledge and technology, and the growing recognition of the importance of patient autonomy and empowerment. I don't know where exactly it started, but I think that between the 1950s and 1960s, the paternalistic approach was dominant. And this was based on the belief that medical professionals possessed superior knowledge and expertise. Coming to the 1970s till the 1980s, where the emergence of patient advocacy movements and the concept of informed consent became more formalized and promoting patient involvement and medical decisions. Later in the 1990s till early 2000s, there was a growth of the internet and access to medical information that empowered patients to become more informed about their health. And this earlier also saw the development of patient-centered care models that emphasized communication and shared decision making. Going further into the 2000s till now, there was a rise of the chronic diseases and complex medical conditions and the increasing recognition of the importance of psychological factors in healthcare that further drove the shift towards patient-centered care. And in that sense, medical professionals began to acknowledge that patients' experiences and perspectives are crucial for accurate diagnosis and effective treatment.
Benefits for drug safety monitoring
Federica SantoroSo obviously, it's been a gradual process and one that benefits healthcare and all parts involved. As you say in the article, patient engagement will help all aspects of the medicine life cycle, including our so-called favorite stage, so post-marketing surveillance. Let's go into more detail on that. How can patients help with drug safety monitoring specifically?
SPEAKER_01Now, patients can play many roles in post-marketing surveillance. Starting with the most important way through the reporting of adverse events. I think in many countries, patients are now reporting their adverse events of medicines, and patients can report whether they are unexpected or if they have any negative effect they experience while taking the medications or undergoing treatment. This information is really valuable for people working in pharmacovagilance because it helps us a lot in identifying potential safety concerns that might not have been already observed during the clinical trials. And reporting could be through some kind of official channels or through an online reporting system or healthcare providers. So there are many options for that. Also, they could use the mobile applications and digital platforms that some of the regulatory authorities offer and allow patients to report the adverse event and provide feedback on treatments. The other thing that patients could help and be part of is that their participation in the patient registries and surveys. These kinds of surveys are designed to collect information about patients' experiences with the specific treatments. The registries could also help to track long-term outcomes, effectiveness, and safety, providing a broader understanding of the treatment's real-world impact. Also, participating in research where patients can engage in different types of research studies that focus on the monitoring of safety and effectiveness of treatments over time. This participation can provide also valuable insights into how treatments work in real-world settings. And I'm concentrating here a lot on real-world settings because this is where the patients and medicine are being experienced in the real world, you know, outside the clinical trial settings. I think there's also another way of having the patient say their own words on a medication reconciliation, where patients can actively participate when they visit their healthcare providers. And this involves reviewing, updating their medication list that could not only help the patient but also help the healthcare providers to identify any potential interactions or concerns. I think there is also many other ways of having the patient interaction, but I I thought that these are the most important ways of having patient help and the safety monitoring of medicines, not only medicines, even vaccines.
Federica SantoroYeah, so as you say, there's so many ways patients can make their voice heard and impact healthcare. And
Lessons from valproate
Federica Santoroin the article, you cite Valproate as a powerful example of why regulators should listen to patients. I'm curious, what did you, as a pharmacovigilance expert, learn from that particular story?
SPEAKER_01Oh, indeed, uh, Valproate was a very powerful example. And uh I thought a lot on how to answer this question. So starting with the with the patient's advocacy and inputs, the case of Valproate underscores the significance of listening to patients and incorporating their experiences into pharmacovigilance efforts. Patients' inputs can provide unique insights into adverse effects and help identify safety concerns that might not be evident through traditional monitoring. Also keeping an eye on the long-term effect of medicines, like the case of Valfroids, because the case was seen after the birth, with the birth defects and developmental issues in children born to mothers taking the drug during pregnancy. The way of we communicate with patients and how to communicate the risk and how we should uh do the effective communication about the medication risk is also another point. And it's important to work closely with the healthcare providers or the regulatory agencies to ensure that the accurate and understandable safety information is provided to both the patients and healthcare providers. So, this is the way that I think that pharmacovigilance experts and professionals should work with all parties. Also, the uh value provided cases highlights the importance of robust data analysis and surveillance systems. As pharmacovigilance professional, I think we should uh use the most advanced data analysis techniques to identify the kinds of patterns and trends and adverse events and to enable the early detection of potential uh safety signals. Added to that, we should promote the shared decision-making concept between the patients and the healthcare providers. This is the best way to provide comprehensive safety information, and the patients can make informed choices about their treatments, and they will be able to weigh the potential benefits against potential risk. The effect of this case on the labeling and risk minimizations also was uh very prominent. It shows how much it is important to work with regulatory agencies to ensure that the medication labels accurately reflect safety concerns and provide clear instructions for use. And uh also it shows that it is important to collaborate with the patients and groups and to build a strong collaboration with patient advocacy groups that can facilitate the exchange of information and improve patient engagement in pharmacolingency force. Because uh patient advocacy groups can provide valuable insights into real-world experiences and to provide a continual learning opportunity because it highlights the need that all professionals should continually update their knowledge and skills and staying informed about evolving safety concerns and advancement in pharmacovigilance practices, which is important and essential for effective monitoring.
Federica SantoroSo many lessons learned. It sounds like we'll have lots to reflect on even in the coming years. I know lots has happened in the regulatory and pharmacovigilance world in the wake of that story, but I'm sure there will be more changes coming as we reflect on that case even more.
SPEAKER_01Totally agree.
Overcoming obstacles
Federica SantoroUm I'm glad you cited communications in the mix as well. That's obviously a topic that is dear to my heart, and we'll come back to that in a little bit. But first, I'd like to ask you about the obstacles to patient engagement. So I think empowering patients as partners really requires a mind shift, and maybe not everyone is ready to embrace that. And I can imagine that prejudices or cultural barriers sometimes can get in the way. For example, patients might think it's not their place to have a say in healthcare, and healthcare professionals, on the other hand, might think their authority is being challenged when patients are involved more. How would you say we should overcome these obstacles? Thank you so much.
SPEAKER_01Very challenging question. Uh, there are some kind of challenges related to the patients, other challenges related to the healthcare professionals. So, starting with the education and awareness. It's important to educate patients about their rights and the importance of being an active participant in their healthcare. This will help them understand that their input is valuable for better outcome. On the other hand, it is important to provide the healthcare professionals with the training on patient-centered care and communication skills to help them recognize the benefits of involving patients in decision making. The shared decision making is very useful to encourage patients to ask questions and discuss treatment options with their healthcare teams and to let them know that they have a right to be involved in decisions about their health and for the healthcare professionals to involve. Patients in discussions about their treatment plans and to respect their preferences and work together to make the decision. Both parties should put in their mind there's some kind of cultural sensitivity that could be one of the obstacles. And for the patients, if such a cultural belief discourages patients' involvement, they should work on to bridge the gap by explaining the benefits of being active in healthcare decisions within the context of their cultures. And for the healthcare professionals to be culturally sensitive and respectful of patients' beliefs. And to tailor communication, to align with cultural norms while still emphasizing the importance of patient involvement. And for patients to join advocacy groups is crucial to gain a stronger voice and support. And the collective reports can help change perceptions about patient involvement. For this point, the healthcare professionals, I think they need to collaborate with patient advocacy groups to foster a culture of patient empowerment and engage these groups in discussions about healthcare policies and practices. I like one of the terms that is used in patient safety called the positive deviance, which is to promote success stories. We don't have always to talk about the negative stories or the negative side of patient safety and patient involvement. We should also highlight and share stories of patients who benefited from being active participants in the healthcare. And this will also inspire both the patients and the healthcare professionals. One of the other obstacles is the technology and resources. It's important also to provide the patients with access to reliable health information and resources that encourage their involvement in healthcare decisions and to use the technology to facilitate communication between patients and healthcare providers. This would make it easier for patients to ask questions and share their concerns. And I think this was very evident during the COVID-19 vaccine era, where it was very difficult for patients to reach healthcare providers, so they were talking through using different platforms, and this helped a lot. Another obstacle is the policy and institutional changes. For example, healthcare institutions can establish guidelines that prioritize patient empowerment and encourage a collaborative approach. We can also overcome these kinds of obstacles by having the leadership and role model where healthcare leaders can set an example by valuing patient input and involving patients in decision making. I think with these kinds of bullet points that I mentioned, maybe we can break down the barriers, we can change the mindset and create an environment where patients are empowered to be active partners in their health care journey.
First steps
Federica SantoroYour suggestions sound very sensible. Obviously, it's not a change that is going to happen overnight, but it's important to put in the effort to make sure people feel the value of increased patient engagement. I'm wondering though, this can sound quite overwhelming to regulators or healthcare professionals that want to get involved but have never done it before. So where should they start? Where would you advise they get started? And also, you know, everyone is so busy these days. How would you say they should put that into their existing workflows?
SPEAKER_01Indeed, indeed. So I like a lot education and training. So we can start by educating uh healthcare professionals and regulators about the importance of patient engagement and its benefits. Also, to create channels for patients to share their opinions, experiences, and concerns through simple things, through surveys, focus groups, online platforms, where patients can provide feedback. So opening channels with patients is very important and very simple indeed. It's not that big issue. And to consider including patient representatives on advisory panels or committees, and reach out to patients, advocacy groups, and organizations related to specific conditions, like the in the case of Valproate. Specific condition, specific patient to group. The most important thing is to define the goals of patient engagement. What do I need from the patient? What kind of engagement, the level of engagement, this is important, so that we can decide what we want to achieve by involving them in decision making. The point that you mentioned regarding leaving patients' engagement into workforce, you know, when we create the different kinds of documents as regulators, guidelines, one of the feedback we can receive from the patient representatives, because we are taking lots of points from lots of parties. So this is one of the parties that also we could have their feedback on that. They need to be trained, yes, of course, they need to be trained on how to give such feedback. And when designing research studies or clinical trials, we can seek input from patients because they could help shape the research questions and study design to better reflect real-world situations. So we need to educate the patients so we can get the best of them when we need them. And we know that there's lots of research related to patient reported outcomes. To integrate these kinds of reported outcome measures into clinical practice, these measures provide insight into patient experience, symptoms, and the quality of life. One example from my setting during COVID-19, when we started to deploy the COVID-19 vaccines across the country, we start to think how we can involve the beneficiaries, I'm not going to say the patient, the beneficiaries, into reporting the adverse event-following immunizations. So we start developing an online form, simple form, with lots of bullets and with video explaining how to fall the form, and the feedback was very satisfying. And it was, we were so happy with the kind of information that we received from the patients. Also, to include patient representative in the review of medical information, product labeling, educational materials. I could always say that such kind of feedback and input will improve the clarity and patient friendliness of these materials. Also, regularly assess the impact of patient engagement initiatives. We can't only say that we are working. We need to find a way to see how much it is impacting the patients and the health system.
Federica SantoroSounds like we need a follow-up episode to dive even deeper in the topic. There's so much to say, and you raise so many good points. I especially liked your point about setting really clear goals and expectations because that can inform your strategy, right? I think often for people it's just really difficult to change habits. But if you know exactly why you're doing something and what you want to get out of it, then that can help you weave changes into your existing processes and hopefully make it all uh smoother? Um right,
How to talk to patients
Federica Santorolet's talk about communication now for a little bit. Because I think it can also feel daunting for regulators and health professionals to know how to talk to patients, and maybe that can be a reason why they shy away from engaging patients more. So, how do you know what information patients need to hear and how to best give that information to them?
SPEAKER_01Well, knowing how to communicate with patients effectively is an important skill. When I say it's a skill, it could be taught. It's not one with the person or the healthcare professional. So, how can we figure out? It's very simple. First, start to listen to the patients and asking the patients open-ended questions and actively listening to their concerns, and to let them share their thoughts, feelings, and the questions before the healthcare providers start explaining things. And this is the most missing part in communication between the healthcare providers and the patient because they, as soon as the patient is there at the office of the healthcare providers, they start talking without giving the time for the patient to express what they want to. So this is the most unimportant thing. The second one is to ask about their understanding. Before providing the information, we should ask the patients what they already know about their condition or treatment. Because this would help to gauge their level of knowledge and tailor the explanations that we are going to give to the patients. And to use a plain language to avoid the medical jargon, to use the simple everyday language that patients can easily understand, and to explain terms when we use them and encourage patients to ask if something is unhealed. Also to be empathetic and to show understanding and compassion, to acknowledge patients' feelings and let them know that we are here to support them, to tailor the information, to personalize the examplations based on the patient's background, preferences, and health literacy level. Because some patients may want more details while others prefer a concise overview. And also, it is important to help patients understand the bigger pictures, to explain how their condition or treatment fits into their overall health and well-being. Sometimes using visual aids, diagrams, pictures, or models to illustrate complex concepts could also make the things clearer and more engaging. And to chunk the information, break it down into smaller, manageable pieces, and to present one key point at a time and check if the patient is ready for more information before moving on. Also, using analogies to compare medical concepts to everyday situation that patients can relate on. Because this can simplify complex ideas. Also, addressing the concerns, encourage patients to share their worries or questions, and address any misconceptions they might have before moving forward. And offering written materials, pamphlets, online resources that patient could take home with them allows them to review the information at their own pace. I mean, it's not only communication, we need to have effective communication. As I said, it is a skull that develops with a practice. So the more we practice, the more we got this skull. And we need to know that each patient is unique. So to be flexible in the approach and adapt based on their individual needs and preferences is also crucial for every healthcare provider.
Federica SantoroYeah, I appreciate that. We're only scratching the surface here and we're giving very general pointers, but I think that that hopefully can inspire our listeners already to try and implement one or two things in their daily work. So thanks for sharing that. And we have other episodes in our archive that tackle, for example, patient reporting and risk communication, where we dive deeper into a few of these things and how to communicate effectively with patients. So I can link to those in the show notes for those who want to know more.
Patient and Consumers Working Party
Federica SantoroSo, Manal, while I was uh reading up on the topic ahead of this interview, I came across the European Medicines Agencies, Patient and Consumers Working Party. Can you tell me how that works, if you know?
SPEAKER_01Um, this is a great example of the engagement of patient and patient groups with the regulatory authority. The European Medicine Agencies, patient and consumer working parties, plays a crucial role in involving patients and consumer and regulatory processes. And this is not something factual, this is a real thing and happening regularly through it works through certain processes, starting with the representation. So the patients and consumers working party includes representatives from patient and consumer organizations across the European Union. These organizations are selected to ensure a diverse range of perspectives. Then through the engagement where the patient and consumer working parties provide a platform for these representatives to share insights, experiences, and perspectives on various healthcare topics. They contribute to discussions about medicines, development, safety, access, and even more. So the patient and consumer working parties is involved in the EMA's activities through consultations, workshops, meetings. They also take part and contribute to the development of guidelines, policies, and initiatives that considers patients' and consumers' needs and preferences. The patient and consumer working parties collaborate with the EMA experts, healthcare professionals, and industry stakeholders to ensure that patients and consumers' perspectives are integrated into decision-making processes.
Beyond the European Union
Federica SantoroDo you know if there are similar groups outside the European Union? I'm wondering if patients want to get involved. Are there any such groups outside the EU?
SPEAKER_01I don't have a specific answer to that, but generally speaking, they could use the search engines to look for patient advocacy or consumers organizations related to healthcare or specific medical conditions in specific country or region. And also to check the social media platforms for groups, pages, or forums dedicated to patient advocacy or healthcare discussions in a specific area or region. Also, maybe they could inquire at local hospitals, clinics, or healthcare centers about patient support groups or organizations that are active in that community. Sometimes governments, health ministries or departments might have information about patients groups or initiatives related to healthcare engagements. Also, they could reach some international patient advocacy organizations that have chapters or affiliates in different countries. They might be able to provide guidance or finding local groups. And one example is the international organization called Patients Like Me, where they encourage patients to post their stories regarding their experiences with medications and healthcare systems from different parts of the world. Medical professionals, they could consult them and also they could be aware of such kind of organizations or resources that they could connect patients with. Not to mention that attending healthcare-related events, seminars, conferences in the region or worldwide could also offer patients, advocates, healthcare professional organizations a way of communicating together. Of course, the process would vary depending on which country or region. But the key point is you can seek a patient organization, advocacy groups, or initiatives that could align the patient with the interest and calls for patient engagement.
Starting the conversation
Federica SantoroRight. What about if patients want to start a conversation with their healthcare provider about getting more involved in the drug safety process? How should they do that?
SPEAKER_01Indeed, starting such a conversation with the healthcare providers can be a positive step towards the patient's active participation in their own healthcare. I don't know if these points would help or not, but I think that patients should at least start by scheduling an appointment or visit with the healthcare providers where they have enough time so that they could talk without feeling rushed. And they could begin by expressing the interest and learning more about the safety, like to say, I've been reading about the drug safety and I'd like to be more informed. And they should share the motivation, like saying, I believe that being informed about the safety of my medication will help me make better decisions about my health. And they could also ask the healthcare providers, could you please explain how drug safety is monitored and how can I play a role? And they could also even discuss such kind of role through the patient reporting systems, surveys, or other ways for sharing the experiences. And they could also ask for resources from there where you could get the information, whether it is educational, whether it's website, patient advocacy group, and these all can help better understand the drug safety. And also they could ask, for example, I'd like to stay informed about the medication I'm taking and report any unusual experiences. This is also a good way of setting their expectations, and it is also a good thing to plan for the next step. Signing up for patient safety alerts, keeping a medication journal, or joining a patient advocacy group. So by expressing the interest and seeking ways to be more involved in the drug safety process, patients can contribute to their own health and potential help all other patients as well.
Federica SantoroThere's certainly plenty of ways to get involved if you want to get involved. I think the starting point is just wanting that engagement, right? Yeah, totally agree. Well, thank you so much, Manal, for joining us today. I'll let you go now because I think I stole enough of your time, but you gave us so much food for thought. We have plenty of ideas now for so many more articles and episodes. Thank you. Thank you so much. It's my pleasure. Thanks a lot for being with us today. Thank you!
Outro
Federica SantoroThat's all for now. But we'll be back soon with more long reads as well as our usual in-depth conversations with medicine safety experts. If you'd like to know more about patient engagement, check out the episode's show notes for useful links. For more stories like this one, delivered straight to your inbox every month. Sign up for our free newsletter at upsalaports.org slash subscribe. If you like our podcast, subscribe to it in your favorite player so you won't miss an episode. And spread the word on social media so other listeners can find us. Uppsala Monitoring Center is on Facebook, LinkedIn, and Twitter. And we'd love to hear from you. Send us comments or suggestions for the show, or send in questions for our guests next time we open up for that. For Drug Safety Matters, I'm Federica Santoro. I'd like to thank Mana Yunos for taking the time to talk to me, Alexandra Coutinho for reading the article, Matthew Barwick for post production support, and of course you for tuning in. Till next time.
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