mhealth

Why do we use more advanced monitoring tools in our daily lives than we do in biomedical research? Every scientist knows that discoveries from biomedical research are useless if they cannot be replicated. Yet, in a recent survey by Nature , 70% of researchers indicated that they have tried and failed to reproduce another scientist’s experiments, and more than half have failed to reproduce their own experiments. That’s an astonishing number, especially if you think of the billions of euros that are then being wasted. Back in 2011, I was running a biotech startup that was involved in a European project to filter stem cells from umbilical cord blood, and then expand them to high numbers while suppressing the differentiation. We had very promising results. As part of the project, we were culturing patient stems cells and - as anyone with experience of cell culture knows - they need to be fed sugar and nutrients regularly. Indeed, they need a lot of care and attention, and the normal practice was to check them twice a day – even on weekends. Unfortunately, one Sunday, the cells were not checked and fed due to a personal emergency of a staff member. Normally this would not pose a big problem – the cells were usually split to a new flask with medium on Monday. However, on that occasion the lack of feeding did cause a problem. The flask grew confluent and the cells were lost, along with much of the work leading up to that point. We had a disappointing meeting with all project members, and I remember that on the way back I was driving and my colleague was working on his smartphone. I asked what he was doing and he said he just changed the climate control in his house and...
My name is Isabel Saraiva. I’m Portuguese and ex-smoker. I quit smoking in April 2006 when I was diagnosed with COPD, Chronic Obstructive Pulmonary Disease. COPD is a progressive respiratory disease characterized by the obstruction of lung airflow making breathing difficult. Prevention, which means quitting smoking and access to early diagnostic, is the most important issue for people with this Chronic Respiratory Disease. I was lucky enough to be diagnosed without delay and I succeed in quitting smoking. I can say that my COPD is under control and I have a full, rewarding life. But I’m sure, starting with the diagnosis, that without several categories of medical devices, some of them so ordinary that almost nobody gives them a second look, my life will be completely different: breathless, dependent, depressed, without proper diagnostic and treatment. 1. What medical devices are relevant to your disease area? As a COPD patient, the mandatory monitoring of my condition and coping with the day to day life can’t discard a diversified set of medical devices: from the sophisticated x-Ray, T-scan and spirometry machines needed to evaluate the disease progression, to the inhalers to spread medicines in my lungs, or even the humble syringes needed to take blood in order to evaluate the level of oxygen in my body. Medical devices are always there for me and each and one of them is important for my wellbeing. They provide valuable and accurate information about my health and my condition to my doctor and to me. They help to calibrate my treatment and they make my life safer and more predictable. 2. Have you seen any development in recent years in the treatment of the disease which were helpful to you? The improvement of the drug delivery systems and the inhalation therapy, together with new and...
I am delighted that EPF has embarked on a one-year campaign on patient empowerment and the support that this is receiving from many health stakeholders who participated in our launch conference . When I think back to when we created EPF 12 years ago, enabling patients to become active at all levels was one of the fundamental aims for this new organisation. It is part of our DNA. Last year, we raised the bar on patient empowerment through our investment in the EMPATHIE project which mapped initiatives to empower patients across the European Union. We led a specific piece of work exploring different scenarios on European cooperation in this area. A European strategy A very clear signal emerged from this work on the need and indeed the appetite for a European strategy on patient empowerment. We all know that this is not uppermost on the political agenda and our work over the next year will hopefully stimulate fresh commitment as well as fresh ideas on how to move forward. Everyone’s business There are many campaigns in Brussels and many groups advocating for their rights. Why, we might ask ourselves, should this one be any different? The answer is because patient empowerment is everyone’s business. One in four people in Europe has a chronic disease and this figure will not decrease over the next few years as demographic trends gear towards ageing and the increase in chronic diseases. We as patients no longer accept being passive recipients of healthcare; we want quality information, and to play a role in partnership with our trusted healthcare professionals in the management of our disease. Good for health systems There is a widespread acknowledgement that empowering patients is good for healthcare systems. It is increasingly recognised as an essential element for future high-quality, patient-centred healthcare...
Eva is a Slovenian young lady who, 4 years ago, has been diagnosed with type 1 diabetes. Along with sharing her experience with diabetes, the challenges of not being able to enjoy the latest technologies, she explains her involvement in local public health campaigns especially with children to dispel the myths around diabetes and ensure a better knowledge of this condition. 1. What medical devices are relevant to your disease area? For measuring blood glucose level: blood glucose metres, lancets, test strips, continuous blood glucose monitors (sensors). For the delivery of insulin: smart pens, needles, insulin pumps. 2. Have you seen any developments in recent years in the treatment of the disease, which were helpful to you? I have been diagnosed with type 1 diabetes for 4 years. During this time, a lot of new blood glucose metres have become available, that are more precise, work faster, and require less blood for measurement. There are also regular improvements in insulin pump technology, such as the ‘closed-loop’ system, which prevent some hypoglycaemic events. Sadly, none of these improvements were helpful to me, because our insurance company only covers the fee for a new insulin pump after 8 years of use. In the end it can be quite frustrating to hear about new technology in the media or from other sources and not be able to afford it as soon as it is launched to the market. 3. What initiatives to educate people about the disease have you been involved in or seen, which you think might be interesting for other countries to learn from? I have been involved in many public health campaigns with the topic of diabetes and healthy lifestyle. In my opinion the most interesting initiative in Slovenia is the annual competition in on your knowledge of diabetes, which...
BVMED, the German national medical devices association, has initiated a campaign to raise awareness about medical devices and empowering patients to be body proud, despite having a medical device. We have translated extracts of Peter’s story as part of European MedTech Week. To view all the stories, click here . Why are you supporting the “Body pride” campaign? To begin with, I had to think it over thoroughly. I thought: once thousands of people see you on a poster with your backpack, they will become pretty used to it. I also wanted to reassure others; show them that you can live well with such an illness and cope with your everyday life. What do you suffer from? Since birth, my intestines haven’t worked as they do in healthy people. They only absorb small quantities of nutrients. This malfunction leads to further extreme complications. I no longer have a large intestine. It was surgically removed when I was barely a year old. When was your illness diagnosed? As a baby, my mother was still nursing me and everything was fine. However, things took a turn for the worse once I should have been taking solid food. I would often vomit and had stomach pains. That is why I was often hospitalised. I underwent surgery repeatedly because the doctors could not really establish what was wrong with me. At first, they thought that it was due to an intestinal obstruction, which was not the case. Since when have you been receiving parenteral nutrition? For a long time they tried to feed me naturally. However, when I was three years old, only parenteral nutrition could improve my general condition. And it worked: artificial nutrition made me better again. I need this to feed me nutrients and to compensate for my loss of fluids...
1. What medical devices are relevant to your disease area? There are a number of medical devices that are important for patients with incontinence conditions. Bladder installations for interstitial cystitis, neuromodulation devices help patients to address pain symptoms and catheters, are examples of the devices used. 2. Have you seen any developments in recent years in the treatment of the disease, which were helpful to you? New innovative bladder installations have been very beneficial for patients. These novel devices contain chondroitin sulphate and /or hyaluronic acid. Such devices are far less invasive than other bladder installations and provide a much better quality-of-life for patients. 3. What initiatives to educate people about the disease have you been involved in or seen, which you think might be interesting for other countries to learn from? I’m involved in quite a few things and have seen some good examples of patient advocacy. ● Public relations and communications: Within our national association, we have set up a public relations group which is flourishing. They have been working successful on getting media coverage and are active on social media, an important forum to communicate with patients and inform. The group also developed very helpful patient-friendly leaflets. ● Promoting the patient voice at scientific congresses: We have a multinational organization, which aims to raise awareness and involves with around 8 European countries. The German group are particularly active and are doing a great job. Moreover, we work with other international organizations such as the International Pelvic Pain Partnership which involves 12 countries with many patient-led activities, and at the Abdominal Pelvic and Pain Conference the World Federation for Incontinent Patients creates promotional activities and organizes both a Patient Day and is actively involved in the plenary session at this conference, which is attended by urologists and urogynaecologists...