Congratulations to all the Winners!

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There are two pressing issues that our work in Duchenne muscular dystrophy addresses. First, we support potentially life-saving research for a rare pediatric disease that has traditionally been underfunded. Second, we combat the inhumane disparities in care and quality of life for pediatric disease patients; refusing to accept that a parent’s ability to care for their child with a catastrophic disease should EVER be dependent upon their finances. We aggressively fund the most promising research to create hope for the future, and we offer financial support to assist families with critical needs such as travel to clinic, home modifications and accessible vehicles, thereby eliminating stress and suffering in the present. We build connections with caregivers in order to help them navigate a complex diagnosis and medical system. When caregivers are heard and supported, they are able to care more effectively for their DMD child(ren), other members of the family and themselves. Additionally, Marissa speaks at conferences, meetings, and pharma companies to tell the Duchenne story, and she is a passionate advocate for funding and policy issues.

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The MPS Society is a membership organisation free to join to any parents of a child with an MPS or related disease, any affected individual over 18 years old or any parents or partners of a patient who has died. We currently support 1,080 children, young people and adults with MPS and related diseases, reaching around 90% of those diagnosed in the UK currently. In addition, we support their families including parents, siblings, partners and carers, numbering more than 5,000 beneficiaries in the UK. We also offer support to over 500 bereaved families who have lost a loved one.

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With an ever-increasing demand for uptake of free membership to our Parkinson's Concierge social media channels, we have gained our foothold into the role of patient advocates. We also fully understand the urgent need for support and services for the caregivers, who, in our opinion, face even a tougher journey than those of us with the condition. We have therefore created a separate social media area for the caregiver community, who may have questions they wish to keep private from their loved ones. In recognition of the tireless work and dedication this "army" provide within the community, Parkinson's Concierge have established a Carer of the Year award.

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Gerri Smoluk is an AML survivor, diagnosed at age 56 in 2016. She is currently in remission following successful completion of two rounds of induction therapy and four rounds of consolidation therapy (high-dose chemo) in 2016. Gerri is the Patient Empowerment Network's AML Network Manager! Acute Myeloid Leukemia (AML) patients have seen a flurry of treatments over the last few years, and there is a big need to fill the knowledge gaps for many patients who are being introduced to brand new drugs. Gerri has developed articles, infographics and deep dive resources for AML patients to connect to specialists and the latest via medical conferences. Gerri is putting her science background to work in the form of developing tangible resources that will help more AML patients on the path to empowerment.

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Penilla Gunther is the initiator of FOKUS Patient® together with a SME Business Network called Combrigade, based on her experience from eight years in Swedish Parliament, ending 2018. She established a “Network for Equal Care” which purpose was to invite and discuss with all parts of the Health Care system, agencies, Life Science companies and not the least, the Patient Movement. During these years, more than 50 meetings within the theme of equality in Health Care (from all kind of angles; geographic, between men and women, ages, financially etc), were held in the Parliament and created a huge network of contacts between all these parts of the society. Not to mention the impact the meetings itself have made on legislation, guidelines and increased knowledge and interest from politics.

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The nominee for this award is the Global Brand team of ADYNOVATE® & ADVATE® within the Rare Hematology Franchise, Patient Value & Product Strategy at Takeda Pharmaceutical Company Limited. With 70 years’ heritage in Hematology, Takeda is relentless in their pursuit of a world without bleeds and is committed to supporting people living with hemophilia and von Willebrand disease by delivering new medicines, encouraging early diagnosis and advancing personalized care. However, the Global Brand team of ADYNOVATE® & ADVATE® wanted to take this commitment one step further, to go beyond the product and give back to the bleeding disorders community. The team are always finding new opportunities and innovative ways to extend support for people with bleeding disorders around the world while promoting inclusion for the community. In particular, they wanted to help patients achieve their personal ambitions and live healthier, fuller lives. This desire led them to partner with Virgin Pulse to re-design their Global Challenge program - a behavior science-based well-being program focused on five health modules including physical activity, nutrition, balance, focus and sleep - specifically for people living with bleeding disorders.

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Novartis has created a disease management program that is focusing on the needs of patients living with migraine and piloted it with its own associates in Switzerland. It aims at empowering patients to achieve their personal best living with migraine by leveraging medical insights and lifestyle changes that work best for them. The result is called “Migraine Care”, a corporate health management program that helps employees living with migraine to improve disease management & education and to decrease disability caused by migraine. Over the course of six to nine months, the disease management program is conducted in partnership with the patients, who are associates of Novartis and have self-registered anonymously. The participants first receive a diagnosis of their condition and the following up to six disease management coaching calls are tailored to the individual improvement opportunity and situational conditions, leveraging all medical insights and life-style options. The coaching services are conducted by an external and independent telemedicine provider.

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The traditional working practices of pharma companies mean that campaigns that involve working collaboratively with patient advocacy groups usually take weeks to set up. Add into the mix social media influencers, complex dietary advice, shielding high-risk patients, a clinical expert and a fitness coach and the campaign is likely to take months. But in March 2020, in the immediate wake of the coronavirus lockdown in the UK, the cross-functional team came together to set a new objective: to keep patients safe and well at home. We realised that, for people living with kidney cancer, the 12 weeks of recommended shielding were set to be long, lonely and distressing. In just six weeks, the team delivered a multi-channel and highly-engaging patient support campaign for people living with kidney cancer shielding from coronavirus. Developed in partnership with the leading charity, Kidney Cancer UK, the campaign looked at two core elements vital for sustained wellbeing - that were increasingly challenging during lockdown: 1 - Nutrition: Capitalising on the massive online trend towards social media recipe videos, Ipsen engaged with internationally-acclaimed social media food influencers MOBKitchen to develop and film three bespoke recipes for people with kidney cancer. Every recipe was scientifically backed by data from clinical papers and rigorously checked to ensure patient safety, optimal nutrition and taste! These were devised, filmed, edited and posted on the Kidney Cancer UK website and social media channels in a month. Kidney cancer and nutrition is complex; particularly considering many patients are on medication that can cause gastrointestinal problems or reduce appetite. 2 - The importance of exercise: In kidney cancer the importance of exercise goes way beyond fitness. It can reduce hospitalisation, increase overall survival and improve the efficacy of medication. Yet in lockdown being active is one of the toughest things to maintain. To help we worked with Philipp Zimmer, Researcher and Professor of Performance Health at TU Dortmund University, to record a series of videos on the evidence behind exercise in cancer. We then worked with Honey Beat Dance & Fitness to record home workouts for every ability level - again, ensuring content was backed by data, was practical and helped meet an urgent need for this community. This was uncharted territory for Kidney Cancer UK and Ipsen but it delivered content that is now helping patients across UK & Ire

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Since February 2020 Italy started facing an increasing number of COVID-19 cases, spreading in a short while from a couple of initial localized to outbreaks to the wider national territory. This sudden increase of cases, requiring frequently hospitalization and intensive care caused, gradually, an huge overload in Italian health care system. Due to this emergency, since March, GSK Italy's team of Patient Focused Development & Medical Insights (Patients&Insights) started being contacted by Respiratory PAGs (Patient Advocacy Group) reporting the below needs from patients:- In many cases, it was impossible for the hospitals to administrate the therapy, due to serious emergency of Covid-19 - In other cases patients did not want to go to the hospital, because they saw it as a possible vehicle of infection, despite reassurances from doctors and considered hospital administration of therapies to be risky; -however, the awareness of the importance for their health of continuing the therapies according to prescription remained high and there was a fear of possible delays in the administration of therapies related to the objective difficulty caused by the health emergency. Basing on this, the Italian team of Patients&Insights decided to immediately start working to potentiate the ongoing PSP "Aria di casa" in order to support the national healthcare system struggling with the COVID-19 emergency, to meet severe asthma patients’ need of a safe administration of their therapy. Currently (April 2020) the PSP 14 centers to meet the expressed need for +122 patients with severe eosinophilic asthma, joining to the 89 already enrolled in the past years

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Whilst the patient population for which his organisation was developing a medicinal product - highly sensitised patients currently not eligible for kidney transplant - was in line with ultra orphan populations, Eric recognised that ALL patients with end stage kidney disease, currently on dialysis and awaiting a donor kidney, needed a support system, a handrail to help them become and stay 'transplant ready'. The programme he envisaged would go beyond commercial concerns, be open to all those who needed a kidney transplant, to guide then to be transplant ready and increase their chances of long term graft survival. His vision was a programme tailored specifically to the patient themselves, to include behaviour change tactics, and would point patients towards support materials to help them through what is a gruelling and psychologically, economically and physically demanding journey.

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in addition to taking their treatment, patient with diabetes need to measure and write down their blood glucose & insulin injections several times per day. This is a real hassle for patients to fill in their logbook and DIABNEXT is here to help them compile the data to fill in their logbook automatically. The uniqueness of the solution is first that the plateform gather both insulin & glycaemic levels. Competitor solution offers one part and you need to enter other info manually. The uniqueness of the solution is that CLIPSULIN and GLUCONEXT are universal and compatible with ALL insulin pens and ALL BGMs which preserves HCPs prescription freedom over time to keep following his patients. There is no commercial link nor preference for a specific brand/device. Finally, some really cool functions are coming up, such as an AI based tool to estimate insulin required based on meal pictures...

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// Visually disabled people are not receiving any supportive service while using their own drugs. // Current models that they are using is to store drug boxes in different places at home, cut different parts of box to remember them or to call somebody to read the details on boxes for them. Market is not advising any other solution for them. // Aim is to make this group feel self-confident for management of their own health. Speaking Drug is a smart phone application that helps visually-disabled people to use right drug with the right usage directives. Because it is totally changing the way of drug usage for Focus group (visually disabled people)

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icometrix (Leuven, Belgium; Chicago, USA) is a startup founded in 2011 as a spin-off company of the University of Leuven and the University of Antwerp with the aim to bring quantitative image analysis from research to clinical practice. We developed the fully automated icobrain software for anatomical brain MRI and CT quantifications in multiple sclerosis, dementia, traumatic brain injury, stroke and epilepsy; and icolung for CT quantification of affected lung tissue related to COVID-19. icometrix launched in 2020 icompanion, a CE-labeled digital patient platform that has been developed for people living with multiple sclerosis and their neurologists, but is being extended towards other medical conditions.icometrix launched in 2020 icompanion, a CE-labeled digital patient platform that has been developed for people living with multiple sclerosis and their neurologists, but is being extended towards other medical conditions. - The need for tools that empower patients, and give patients a complete view and control over their clinical data. - The need for tools that empower patients, and give patients a complete view and control over their clinical data. - The need for objective clinical data providing an accurate overview of a patient’s actual status, as opposed to a limited snapshot recording from a clinical visit, to enable better treatment decisions in full transparency with the patient.

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Patients with end stage kidney disease (ESKD) require renal replacement therapy in the form of dialysis of kidney transplantation. Dialysis is an expensive, time-consuming process, with a high morbidity rate and transplant is the preferred route wherever possible. However the journey towards, and beyond transplantation is challenging. Patients typically wait years for a suitable donor kidney, at which point transplantation must be conducted as a matter of urgency. The emotional burder of this adds to the mental and physical load associated with ESKD itself and the demanding dialysis regimen. Moreover, 1 in 3 people awaiting a transplant are considered 'highly sensitised': they have anit-human leukocyte antigen (HLA) donor-specific antibodies, rendering them immunologically incompatible with most potential donors. For these patients, the demands of preparing to be 'transplant ready' can be particularly gruelling. transPLAN would incorporate A virtual transplant community centre Data collection via a de-identified patient registry and clinical practice registry. A programme to support behavioural change among pre and post transplant patients. Its overall objective and the reason it is so innovative is that it is the only programme of its type that empowers the patient. It is global, multi-lingual, interactive and personal. It :.

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PatchAi Srl is an innovative Italian start-up founded in August 2018. We aim to transform clinical research and patient support programs by virtue of focus on patient centricity and forefront digital technologies, such as Artificial Intelligence and Machine Learning through digital health solutions dedicated to safer, faster and affordable medical product development for the betterment of patients’ lives. We are live in the market with proven metrics from our first clinical trial project. In an era where the rise in costs and complexity of clinical research are unrelenting, the pharmaceutical industry is strenuously trying to accelerate the go-to- market time for new medical products. With innovative, targeted therapies for rare diseases and gene therapies, complex data points need to be collected and this has resulted in the advent of Real World Evidence (RWE) which focuses on patient reported outcomes concerning the drug effectiveness on their quality of life.

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BestHealth4U (BH4U), founded in 2017, is a Portuguese company specialized in developing new and advanced material solutions for the medical field. BH4U differentiation relies on its multidisciplinary and dynamic team comprising committed entrepreneurs with vast experience in research in the field of medical biotechnology, materials engineering, product design, management, business development and marketing strategy, clearly focused on fulfilling the market needs and help improve patient’s health and quality of life. Medical adhesives are widely used in several care settings, being part of a variety of medical products including tapes, dressings, electrodes, devices for medical monitoring, ostomy products, transdermal delivery patches, kinesiology bands, etc. A common event associated with their usage is medical adhesive-related skin injury (MARSI), having a serious negative impact on patient’s quality of life, clinical outcomes and facility costs.

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// Visually disabled people are not receiving any supportive service while using their own drugs. // Current models that they are using is to store drug boxes in different places at home, cut different parts of box to remember them or to call somebody to read the details on boxes for them. Market is not advising any other solution for them.// Aim is to make this group feel self-confident for management of their own health. Speaking Drug is a smart phone application that helps visually-disabled people to use right drug with the right usage directives. Because it is totally changing the way/behaviours of drug usage for Focus group (visually disabled people)

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Our solution measures patients Pulse Wave(https://youtu.be/hUUUUN3EZUs) using a smartphone camera (Zencorlabs multispectral photoplethysmograph) and the ashlight stimulated by a respiratory maneuver (Valsalva Maneuver). The result of the test (https://youtu.be/lCpk_naQEP0) is a clear picture of current Heart Failure (HF) status described as Heart Rate (HR) VS Pulse Pressure - The Zencoreye (https://youtu.be/IZ0-dkJSWN0) curves and the corresponding LVEDP (click the links to watch a demo).
It allows any Health Care Professional to have a real-time feedback on the ecacy of the prescribed Heart Failure medical treatment. Our solution is a combination of two already operational and regulated technologies.
The rst one is out there since 2010, which enables measuring Heart Rate using a smartphone camera and ashlight (https://bricheck.com, https://preventicus.com). While the second one is the Noninvasive estimation of Left Ventricular End Diastolic Pressure (LVEDP) based on Pulse Wave features triggered by Valsalva Maneuver.

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Rosenbaum Consulting is seeking to solve the problem of the complicated process of Feasibility & Site selection processes between the CROs and the small to Mid-size Biotech companies. Apart from that, we are helping startup technologies to get introduced in front of CROs and Biotech companies to help improve the Clinical Research environment with innovative technologies. The core offering of Rosenbaum Consulting as a startup is to create an easier environment of the country and site selection & feasibility services by creating a network of collaborating sites with experience in Clinical Trials who are actively seeking for new trials and sponsors. Also, we help healthcare startups to implement their innovative technology in the industry and we are connecting with them with pharma and CROs.

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PatchAi Srl is an innovative Italian start-up founded in August 2018. We aim to transform clinical research and patient support programs by virtue of focus on patient centricity and forefront digital technologies, such as Artificial Intelligence and Machine Learning through digital health solutions dedicated to safer, faster and affordable medical product development for the betterment of patients’ lives. We are live in the market with proven metrics from our first clinical trial project. In an era where the rise in costs and complexity of clinical research are unrelenting, the pharmaceutical industry is strenuously trying to accelerate the go-to- market time for new medical products. With innovative, targeted therapies for rare diseases and gene therapies, complex data points need to be collected and this has resulted in the advent of Real World Evidence (RWE) which focuses on patient reported outcomes concerning the drug effectiveness on their quality of life.

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HealthCaring Conversations for Clinical Research® is an initiative designed to facilitate more effective clinical trial conversations between site staff and patients. Identifying the Need: The need was identified through a behavior science review from patients and investigators that uncovered an urgent need for the incorporation of patient voice to foster a more personal connection with clinical site staff, and to reduce the complex nature of communication between healthcare professionals (HCPs) and patients. Through direct conversations, patients relayed not feeling like a true partner in research, and requested more personalized, transparent, and clear communication from site staff. Site staff recognized the complexity of communicating with patients in today’s environment and requested Janssen’s support in providing soft-skills training for staff. The Development Process: HealthCaring Conversations for Clinical Research was developed from an existing evidence-based communications framework proprietary to Johnson & Johnson. The framework, developed by behavior scientists, is designed to help HCPs facilitate patient-centered conversations. After conducting a behavior science review, the framework was adapted for clinical research specifically focusing on collaborative dialogue around trial consideration and participation. The aim is to help HCP’s understand, connect and empower each patient.

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In the guide to the future of medicine, we are seeing fragmented disruptions happening across the healthcare professionals, patient journey, R&D and supply. At AstraZeneca we believe that we need to improve the whole patient experience NOW. Innovation ‘beyond the pill’ is a key driver of leadership in our therapy areas. The more integrated approach to healthcare allowed by digital technology means that medicines can no longer be viewed in isolation from other aspects of a patient’s care. Our vision is to create and strengthen partnerships across emerging biomedical clusters - to accelerate innovation, increase healthcare access and improve outcomes for society. Collectively, the nine hubs seek to promote regulatory leadership, encourage policy innovation, and accelerate drug development and registration across the Emerging Markets region.

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‘Recognising neuromuscular disorders - A practical approach’ is a CPD and soon to be UEMS-accredited e-learning module designed to educate healthcare professionals (HCPs) on how to recognise and diagnose neuromuscular disorders (NMDs) as early as possible in young patients. A key focus of this unique education resource was to upskill HCPs in their own time, without the need to attend formal training. This is achieved through interactive educational content and practical guidance, which can be immediately translated into the real-world setting. The module features videos of real patients, highlighting differences in motor development in children with and without NMD, at a range of ages. Additionally, simple acronyms are taught, to help HCPs remember the most effective way to assess patients for a potential NMD. The module is hosted on the RCPCH Compass e-learning platform. The RCPCH’s reputation and wide reach of community and hospital paediatricians, health visitors, GPs and ancillary primary care staff, all of whom have crucial opportunities to help identify NMDs in children, leading to earlier diagnosis and access to treatments, made it the ideal place to host the module.

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Heart Failure is a chronic condition that has reached a pandemic level. There are 26 Million HF patients globally, which are responsible for 4% of all hospital admissions and 3% of global healthcare expenditure worldwide. Readmission is Costly for Patients, Providers, and Payers. The situation seems to be worse in the US with 6 Million recurrent patients and 1 Million hospitalizations per year. The situation seems to be worse in the US with 6 Million recurrent patients and 1 Million hospitalizations per year. "The Whistle" allows fast and reliable measurement of heart failure by having the patient blow in it.

Our solution measures patients Pulse Wave (https://youtu.be/hUUUUN3EZUs) using a smartphone camera and the flashlight stimulated by a respiratory maneuver (Valsalva Maneuver). The result of the test (https://youtu.be/lCpk_naQEP0) is a clear picture of current Heart Failure (HF) status described as Heart Rate (HR) VS Pulse Pressure - The Zencoreye (https://youtu.be/IZ0-dkJSWN0) curves and the corresponding LVEDP (click the links to watch a demo).

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More than 700 million people worldwide are affected by psychiatric and neurological disorders. Progress in Mind Resource Center (PIM RC) is founded on and reflects Lundbeck’s dedication to helping address this global burden. Lundbeck is committed to the search for improved medical treatments, and through Progress in Mind Resource Center, we hope to further support and encourage greater communication about and around psychiatric and neurological disorders. Psychiatric and neurological disorders are global health problems. In supporting the Progress in Mind Resource Center, we hope to engender and enable continuous focus on the many unmet needs of patients. We want to communicate and spread greater awareness of the massive economic and societal burden posed by psychiatric and neurological disorders. With our unique position as a specialist in psychiatry and neurology, we want not only to raise disease awareness, but also to engage with and support the many stakeholders working towards the international agenda and goals for better and broader acceptance of patients and their diagnoses - reducing stigma and helping increase the opportunities for better patient care and treatment. This Resource Center has been created with the aim of supporting the international Psychiatry and Neurology community in accessing engaging medical education content and stimulating peer-led discussion.

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Rarely do patient’s ideas and innovations get supported and realised by a pharmaceutical company. This collaboration developed blister-pack and bottle opening aids and re-designed blister packs for future use with a Boehringer Ingelheim medicine that was in development. It stemmed from patient organisation involvement in a community advisory board (CAB) providing input on trial and non-trial related initiatives for patients with scleroderma, a rare disease condition. The need for opening aids and re-design of blister packs was identified by people living with scleroderma since they often find it difficult and painful to open medication blister packs and bottles. Scleroderma affects patients’ hands, causing contractures of the fingers, shortening of the digits and digital ulcers. It was established that tools to help push tablets and capsules through blister packs and an aid to help open medication bottles would be a significant advance for many patients. The co-development followed an iterative process involving multiple interactive meetings. The solution identified was that 3D print design files could help with tools such as a blister-pack opening aid. The 3D print design files of this are publicly accessible in order to allow production and modification for blister packs of different sizes. It is intended that the medication-opening tools and accompanying information leaflets will be made available to patients living with scleroderma to facilitate self-management of care.

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Between 2010 and 2050, around 14 million newborns will be affected by sickle cell disease (SCD), an inherited, chronic blood disorder, which can cause severe pain, stroke, organ failure, and other complications, including death. Approximately 80% of these will be in sub-Saharan Africa (SSA). It is a lifelong illness that can put an emotional, physical, and financial burden on patients and their families. It remains a major killer of infants and children in the developing world, particularly in SSA. Approximately 1000 children are born with SCD in Africa every day, and an estimated 50-90% of them will die before their 6th birthday. This is primarily due to a lack of early diagnosis through newborn screening. Further, even if the disease is diagnosed, there is often a lack of access to simple preventative measures, such as vaccinations/antibiotic prophylaxis, or hydroxyurea, the global standard of care. Despite the adoption by the WHO of a SCD strategy for Africa in 2010, the disease is largely absent from the global or national health agenda. At the same time, industry activities are primarily focused on the US/EU markets with only sporadic limited activities to engage in Africa beyond a few clinical trials and no systematic effort to change treatment capabilities and access. For over 40 years, Novartis has been committed to understanding SCD and working toward treatment. Through research, educational resources and access programs, we continue our efforts to support patients, healthcare providers and caregivers. Against this background, Novartis launched a first-of-its-kind public-private partnership to manage the disease holistically in Africa. First launched in Ghana in 2019, the Novartis Africa SCD program aims to improve and extend the lives of people with SCD through a comprehensive approach to screening and diagnosis; treatment and disease management; training and education; and elevating basic and clinical research and scientific capabilities. A memorandum of understanding (MoU) was signed between Novartis, the Ministry of Health of Ghana, Ghana Health Service and the Sickle Cell Foundation of Ghana in January 2019 and the partnership was officially launched by H.E. the Vice-President of Ghana in November 2019. Since then, two more MoUs have been signed with the Ministries of Health in Uganda and Tanzania and the goal is to reach 10 African countries by 2022.

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This submission highlights the fantastic collaboration between the National Institute of Health Research Clinical Research Network (NIHR CRN) and Pfizer in the co-design and creation of the NIHR Patient Engagement in Clinical Development Service: A national way of working to support the life science industry to be able to engage with and involve patients in their clinical trial design, earlier in the process and in a meaningful and well managed way. The challenges of poor recruitment and retention rates across clinical trials is a known issue and the impact on timelines, the resulting costs, scientific discovery and time to market continue to rise. The Patient Centricity movement continues to develop and mature and is often regarded as a potential solution to alleviate the above issues. Involving patients as partners, earlier in the clinical trial design process can pay dividends in the long term, leading to more accessible, appealing and rewarding clinical trials for participants. The Patient Centricity movement continues to develop and mature and is often regarded as a potential solution to alleviate the above issues. Involving patients as partners, earlier in the clinical trial design process can pay dividends in the long term, leading to more accessible, appealing and rewarding clinical trials for participants. Together we have created a unique global offering, a national way of working to ensure patients have the opportunity to help shape clinical research, to reduce the burden of participation and to instill a spirit of collaboration and partnership for mutual benefit. In turn this enables the patient voice to be heard more clearly and deeply, for patients to have greater ownership of their healthcare and research as experts of their own conditions, ultimately leading to better healthcare outcomes and more successful clinical trials.

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The CoVIg-19 Plasma Alliance, founded in April 2020 by Takeda and CSL Behring, and comprising eight other world-leading plasma companies, aims to develop CoVIg-19 - a plasma-derived hyperimmune globulin (H-Ig) that could be one of the first medicines approved to treat COVID-19. Inspired by a conviction that collaboration is better than individual efforts in unprecedented times, this strategic partnership has put individual company interests aside to develop a non-branded potential medicine for the benefit of patients and public health. The Alliance brings together the brightest minds, unrivaled experience, proven expertise and existing infrastructures of its global and regional members. The scope of Alliance activities includes the collection antibody-rich plasma from COVID-19 survivors, the development of a hyperimmune globulin (COVIg-19) for clinical trials, potential commercial manufacture of COVIg-19 if proven safe and efficacious, regulatory submission and broad distribution. An important Alliance principle, should this investigational medicine be successful, is equitable access and wide distribution. There is no mechanism for profits. With clinical production of CoVIg-19 underway, plasma donations increasing exponentially and study design almost complete, the Alliance is already beginning to see tangible progress just two months after its inception.

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Patient engagement (PE) is essential to deliver health solutions that achieve both clinical and patient desired outcomes and improve drug development and delivery efficiency. Today, the approach to improve PE is fragmented, and thus produces fragmented and non-aligned outcomes. Although there exist frameworks and guidances on how to involve patients, there is still a need for further awareness and capacity building within big pharma companies. There is a need to move from doing things FOR patients to doing things WITH patients to develop solutions that accelerate needs and accelerate research to get medicines to patients. PE training can help accelerate this change by making sure that everyone in a pharmaceutical company will understand PE and its value, understand their role in making it happen in order to accelerate the efforts to partner with patients.

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As can be imagined, caring for and treating children with SMA has a shattering impact on family members. In addition to the huge emotional burden compounded by fear of a child’s death, there are elevated caregiving demands, limitations in career choice and progression, and other social and financial consequences. Zolgensma® (onasemnogene abeparvovec) is a transformative one-time gene therapy addressing the root cause of SMA. It is the only therapy to deliver a working copy of the SMN gene to a patient, helping to halt disease progression, and has shown significant, clinically meaningful therapeutic benefit in pre-symptomatic and symptomatic patients. Clinical trials demonstrate prolonged event-free survival, achievement of motor milestones unseen in the natural history of SMA and sustained for 5 years post-dosing to date.

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More info coming soon.

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M3DIMAKER™ has been developed by FabRx, a pharmaceutical biotechnology spin-out company from University College London (UCL), that is leading the research and development of personalised 3D printed drug products. The system has caused a paradigm shift towards medicines manufacture, moving from today’s large scale to small scale production close to the patient. The pharmaceutical printer is specially designed to prepare personalised Printlets™ (3D printed tablets) with different multiple active pharmaceutical ingredients in the form of conventional printlets, orally dispersible tablets (ODTs), chewable formulations or even as ‘polypills’. It has been the product of many years of research into the new and rapidly emerging field of 3D printing of medicines.

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Janssen Pharmaceutica NV (“Janssen”) is rolling out a treatment-agnostic smart system called Care4Today® IBD for patients with Inflammatory Bowel Disease (IBD) taking biologics, irrespective of their treatment. This smart system comprises of a healthcare professional (HCP) web interface and a smartphone app, which is available to patients with moderate to severe Crohn’s disease and ulcerative colitis on the recommendation of their healthcare teams. We have gradually developed this solution, since 2016, through co-creation with patient associations, scientific committees and advisory boards and partnering with a leading health tech company based in Paris. The solution today gives patients access to educational articles and allows them to track their symptoms by regularly completing questionnaires or trackers on relevant parameters such as pain, bowel movements, weight, fatigue etc. This allows HCPs to see how their patient is progressing through the portal and have more informed discussions during appointments. What makes Care4Today® IBD truly innovative is our integration and partnership with Calpro - a leading provider of home-lab faecal calprotectin tests. This integration means that, patients can test a critical inflammation marker in the convenience of their home, in only 20 minutes, and check their results straight into the app. This opportunity reduces test timelines and pave the way for earlier, and more targeted, intervention by HCPs. The solution allows alerts based on the test results to be sent directly to the patient’s HCP, thus supporting them with patient stratification and management, and has obtained a Medical Device Class 1 certification ensuring quality and compliance in accordance with applicable rules and regulations.

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Cleo is a health and well-being app, created for patients living with multiple sclerosis (MS), and their friends and family. Cleo is described as an app for anyone living with Multiple Sclerosis, and it provides: • Articles and patient videos, giving users access to credible, trustworthy information on MS and enabling them to stay informed amongst a plethora of online content. Content preferences are selected during registration and an algorithm showcases articles based on topics of interest, previous reading activity and other criteria provided during onboarding. • A personal journal enables users keep track of their symptoms, mood and activity. This data can be visualised and - if the user chooses - can be shared with their healthcare professional. Additionally, Cleo allows the user to set up customisable treatment and appointment reminders, and can connect with Apple Health or Google Fit. Keeping track of symptoms may enable patients to better track their overall management of their disease, and can prepare them for their HCP appointments, while medication reminders may help support adherence.

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The nominee for this award is the Global Brand team of ADYNOVATE® & ADVATE® within the Rare Hematology Franchise, Patient Value & Product Strategy at Takeda Pharmaceutical Company Limited. With 70 years’ heritage in Hematology, Takeda is relentless in their pursuit of a world without bleeds and is committed to supporting people living with hemophilia and von Willebrand disease by delivering new medicines, encouraging early diagnosis and advancing personalized care. However, the Global Brand team of ADYNOVATE® & ADVATE® wanted to take this commitment one step further, to go beyond the product and give back to the bleeding disorders community. The team are always finding new opportunities and innovative ways to extend support for people with bleeding disorders around the world while promoting inclusion for the community. In particular, they wanted to help patients achieve their personal ambitions and live healthier, fuller lives. This desire led them to partner with Virgin Pulse to re-design their Global Challenge program - a behavior science-based well-being program focused on five health modules including physical activity, nutrition, balance, focus and sleep - specifically for people living with bleeding disorders.

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Duchenne muscular dystrophy (Duchenne or DMD) is an inherited disorder which, although rare, is the most common form of muscular dystrophy in boys and has a huge impact on the quality of life of patients and their families. Whilst there isn’t a cure for Duchenne, a number of interventional therapies and management strategies may help relieve disease burden. Physiotherapy is one such intervention that is of enormous benefit for children and adults with Duchenne, by helping them to maintain mobility, slow disease progression, maintain quality of life, and reduce pain. Physiotherapy for this condition is very specialised and it is important that physiotherapists, patients and their families know how to perform the exercises and stretches correctly. In some countries, there is a lack of physiotherapists who have previous experience in managing Duchenne patients, or if there are physiotherapists with experience, there is a knowledge gap. Sadly, in certain countries, there are no physiotherapy specialities and/or accessing physiotherapists is very challenging.PTC Therapeutics is committed to improving the quality of life of patients with rare diseases, including Duchenne. In 2018, they introduced a physiotherapy education programme after physiotherapists (from a number of different countries) expressed the need for more training and education that would support them with the management of patients with Duchenne. PTC partnered with a group of physiotherapists with expertise in neuromuscular disorders, to establish a series of training workshops across the EU. The educational programme consisted of:

- Educational and practical training workshops for physiotherapists on a pan-EU level, as well as a number of local/regional workshops.

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ParkinsonCare is a patient-centered care&case management digital solution that combines

• a Personal Care Manager (a dedicated Parkinson’s Disease Nurse Specialist) to monitor symptoms and support patients and caregivers in the daily management of the disease

• a collaborative medicine platform enabling timely clinical information sharing, evidence based clinical interventions, and multidisciplinary care.

The platform embeds validated clinical scales allowing standardized assessment of symptoms, tailored advice delivery, timely clinical decision making, and sharing to minimize unnecessary patients' access to healthcare facilities (outpatient visits, ER, and hospital admissions) while maximizing continuity of care at home.

During the COVID-19 pandemic outbreak in Italy, thanks to a joint initiative with the Patients’ Association, ParkinsonCare have provided support to 712 patients, through 6.698 telenursing interventions and 247 televisits with neurologists and other HCPs. Patient Reported Experience measures outlined ParkinsonCare improved patients' understanding of the disease and control on symptoms. Out of 712 patients, only 20 were referred to inpatient visits and ER. All the rest enjoyed the daily continuity of care directly at home.

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The importance of understanding the burden of illness, the impact of diseases and treatments on quality of life, and the size of eligible patient (sub)populations is increasingly recognized by our industry. To meet this growing unmet need, Vitaccess has developed a powerful real-world evidence (RWE) platform, to quantify patients’ experience of diseases and treatments. We combine tailored smartphone apps for patients together with state-of-the-art cloud-based analytics dashboards to provide real-time access to anonymized, aggregated data for the industry and researchers. Our approach is patient-centric, partnering with patient advocacy groups - we combine this with digital technology expertise and scientific rigor to generate high-quality, valuable data. We work with leading pharma and biotech clients to develop and implement these studies, but we also finance our own, building towards a proprietary dataset, scalable by indication and geography. Some of our projects are profit shares with patient charities: we have already made a £10K donation to Melanoma UK, which was used to buy an Adamo Horus HS800 mole mapper for an NHS hospital - for us this represents a significant milestone and a valued opportunity to give something back to patients.

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As part of PTC’s post-marketing commitment to the Pharmacovigilance Risk Assessment Committee of the European Medicines Agency the Strategic Targeting of Registries and International Database of Excellence (STRIDE) patient registry was established, an ongoing, multicenter, observational study evaluating the safety and effectiveness of Translarna (ataluren) in routine care. The STRIDE Registry provides real-world evidence on the long-term outcomes for patients with nonsense mutation Duchenne Muscular Dystrophy (nmDMD) receiving Translarna (ataluren) in real-world routine clinical practice.

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1. 10,000 conversations of patients (across all ages) online, coming from social media, blogs, and online forums. Natural language processing and Artificial Intelligence was leveraged to acquire thousands of organic patient and caregiver conversations, organize them, and to capture key strategic insights, which translated into Patient Behaviour Modeling. 2. French Unbranded Market Research with bone metastatic Patients and Nurses ‘Project Bone Protection’:
i. Patients: 6
ii. Nurses: 5
A total of 11 qualitative tele-depth interviews were conducted with nurses involved in bone metastasis patient management and patients with breast/lung/prostate cancer and bone metastasis. This was followed by a two-week app-based diary activity with patients, which captures self-identity (routine, the impact of COVID-19, life journey, etc.), Living with Cancer (social, physical and emotional impact of cancer, how is the patient coping with it at home with adaptations, diet, exercise, etc.) and their conversations with HCPs (doctors and nurses).

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While randomized controlled trials (RCTs) are the gold standard in establishing the efficacy and safety profile of a drug, there are gaps in how treatment decisions are made in the clinical setting that that real-world evidence (RWE) can sometimes fill. Most RCTs evaluate the effect of an agent without much consideration to patient baseline characteristics thereby underrepresenting certain patient profiles (particularly older patients and those with less advantaged socioeconomic backgrounds). Considering these characteristics is imperative when considering treatment options, as they can impact a person’s ability to adhere to their treatment regimen. For example, a person without reliable transportation may not be able to get to a clinic for a transfusion and could potentially benefit from an oral treatment option, instead. To address some of these discrepancies in Spain, specifically socioeconomic disparities, Takeda Spain conducted the CharisMMa study, an observational, cross-sectional, multi-center study aimed at investigating the sociodemographic and clinical characteristics of patients with relapsed / refractory multiple myeloma treated in routine practice in Spain. The goal was to generate evidence that could help improve multiple myeloma treatment practices in Spain by taking patient’s unique profiles and characteristics into account when considering prescribing patterns and treatment options. By considering patients’ unique needs, physicians can ensure their treatment recommends align with their patients’ unique lifestyles.

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Over the last 10 years, Merck KGaA has established itself as a leader in connected health, in particular in the field of connected electronic injectors for growth hormone deficiencies. Patients & caregivers using our growth hormones have access to this electronic auto-injector to simplify the injection process and share the injection history to their care team via a mobile application and web-based solution. With a large part of the patients and healthcare professionals now actively using this product, there is a immense dataset corresponding to all injection history (age of patients, clinic of affiliation, date and time of injection, dose delivered) which was available for further insights. Applying very strict and specific data privacy rules in compliance with the GDPR and other local regulations, we have been able to access a pseudonymized copy of this dataset for the generation of aggregated and anonymized reports, compiling data for up to 20 000 patients over a period of 10 years. Based on this data, we have been able to properly defined personas, for example categories of patients who were more at risk of low adherence and therefore, by sharing this information to local patient support teams, they can identify their patients matching these criteria and best adapt their support methods accordingly, in the mindset of continuous improvements towards personalized medicine and support.

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Rare Disease Hackathon 3rd edition, Forum Salute at Stazione Leopolda -Florence: a design sprint- like event in which computer programmers, designers, Patient Organizations , collaborate intensively on software projects.
3 preliminary workshops aimed at identifying rare disease patient communities’ main challenges (attendees: Patient Organizations, young engineers and designers, teachers and University Deans)
Patient Organizations actively worked with the teams driving them through the rare disease patient journey, the patients’ needs and the barriers they face in their daily life.

6 challenges identified

• Diagnosis must not be rare
• School and kids with Rare Diseases
• Mobility
• Work for Patients and Caregivers
• Connections between POs
• Disease management
2 days Hackathon
16 teams involved

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Duchenne muscular dystrophy, the most common and severe type of neuromuscular disease, mainly affects young boys. It is a genetic disorder characterized by progressive muscle degeneration and weakness due to the alterations of the dystrophin protein. The first noticeable signs of Duchenne are usually when a child fails to reach developmental milestones when expected, making failure to reach these milestones a key educational target to support early diagnosis of the condition. With early diagnosis, treatment and disease management such as physiotherapy can aid to preserve muscle function, delay disease progression and improve patient outcomes and quality of life. Without adequate care, most boys with Duchenne are wheelchair-bound by the age of 10-12 and may only live until their mid-20s. In Italy, PTC Therapeutics has worked closely with healthcare professionals (HCPs) via educational programmes to fast track diagnosis. This work began after initially identifying that the age of diagnosis was significantly higher in Italy when primary care paediatricians (PCP) are involved in the diagnostic journey.

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The campaign is based on a vision of expanding the knowledge and perception of hypoglycemia (low blood sugar) through an initiative that includes both cinematic experiments, online tools and scientific study. Insulin helps millions of people stabilize their blood sugar levels. However, insulin treatments can also cause low blood sugar, also known as hypoglycemia.

Hypoglycemia can lead to neurological damage*, nonsocial behavior** and, in the worst cases, death***. As the world’s leading insulin manufacturer, Novo Nordisk is committed to create awareness about the occurrence of hypoglycemia and its consequences, and what people with diabetes can do to avoid hypoglycemia.

In order to do so, we had to help people with diabetes and their families open up to each other and talk about hypoglycemia.

Project team:

Helen Cox
Emma Middleton
Emma Lambert
Ellie Foot

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Teenagers with ADHD get labelled, and the labels aren’t good…they’re trouble, they lack concentration, they can’t stand still. The condition is seen as a hinderance and a problem to solve.

From this negative starting point, the general approach is focused on teaching children to cope and to function…as though that’s the best they can hope for, and the message is bleak, making diagnoses of ADHD scary for parents and children.

Takeda believe in bright futures for everyone, so they wanted and needed to change this perspective.

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Launched on 17 April, World Haemophilia Day, "We See You" is a campaign that seeks to raise awareness of Haemophilia in Spain and to shine a light on a condition that affects some 3,000 people living in this country. Supported by the national Spansih Haemophilia Association, the campaign is centred around a microsite, to which people are able to sign up, to "switch on a light" and show their support for people with haemophilia. It is accompanied by a video that is broadcast in the media.

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More info coming soon.

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ASCEND (Academy for Science for Continuing Education in Diabetes and Obesity) is a global, multichannel educational programme to support primary care physicians (PCPs) to improve the care of people living with diabetes and obesity worldwide. ASCEND is an independent CME-accredited programme supported by an educational grant from Novo Nordisk. The International Diabetes Federation projects that 1 in 10 of the worldwide population will have type 2 diabetes (T2D) by 2045 - this may reach as many as 1 in 4 in some countries. Related complications and mortality can be reduced by early control of glucose levels; however, only between 1:3 and 1:5 people achieve their glycaemic targets, leaving the majority of people with T2D at increased risk of complications. ASCEND was launched in 2017 with a blended curriculum designed to provide practical guidance in a highly interactive manner. Content was based on a robust needs assessment and educational gaps analysis amongst PCPs caring for people living with diabetes. There is a particular focus on improving the number of people with diabetes achieving glycaemic targets, especially through reducing clinical inertia and better tailoring treatment - including insulins - to the individual.

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We identified a significant unmet educational need for paramedics and other pre-hospital care staff to receive quality education on: (i) stroke identification, (ii) differential diagnosis from stroke mimics and (iii) optimal handling of identified cases. As a result, we created an educational (non-promotional) website (www.stroke-awareness.com) to upskill paramedics and other pre-hospital care staff on these key areas. The website is compatible with multiple devices to ensure that paramedics can access the training at home or when on the road.

At present, the website contains two parts:

1) the first part (part 1) is comprised of detailed educational content across four modules covering neuroanatomy, posterior circulation stroke, stroke assessment and stroke mimics. Each module contains interactivity and knowledge checks to ensure the learner is engaged and to consolidate.
2) the second part (part 2) is comprised of four real life video case scenarios where the learner can apply and further consolidate the learnings from part 1. Each case has alternative endings and the ending that plays depends on the answers provided by the learner throughout. Each case also ends with a reflection from the paramedic actor to explain the outcome of the case and other important considerations.

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AADC deficiency (AADC-d) is a life-shortening, rare genetic disorder that causes severe disability and ongoing physical and mental suffering from the first few months of life. , Due to its rarity, HCPs may never treat a patient diagnosed with AADC-d, therefore there is a lack of awareness of the disease among HCPs. Children with severe AADC-d will never be able to hold their head up, sit by themselves, stand or speak and typically dying before they reach 10 years of age.2

Symptoms normally manifest in the first few months of life, with weak muscle tone, or floppiness, and episodes of distressing and painful seizure-like oculogyric crises, which cause the eyes to roll up in the head.1,2 Many patients experience a poor quality of life as they have trouble breathing, feeding and swallowing, which can lead to further complications like choking or life-threatening infection.1,2, Fewer than 200 cases of AADC-d have been reported worldwide, but screening studies suggest that it is being misdiagnosed for better-known disorders with similar symptoms, such as cerebral palsy (CP). The diagnosis journey can be extremely challenging for most parents and even HCPs. Many families spend years searching for a diagnosis or living with a misdiagnosis. While there is currently no effective treatment for AADC deficiency, supportive therapies can be initiated on diagnosis, and a gene therapy is under regulatory review in Europe. A number of children diagnosed with AADC-d have already received gene therapy within the clinical trial program. Parents have seen significant improvements in motor milestones development and reductions in the symptoms that cause significant suffering and complications following their child’s treatment.

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Dry eye disease (DED) affects up to 50% of the adult population at some point. Many of them will have mild symptoms, but for some people the condition can become more severe and have a significant impact on their lives. For these people treatment that tackles the underlying inflammatory process is needed to get the condition under control.

Our immersive role play education was created to motivate ophthalmologists to think more proactively about the needs of patients with DED and build their confidence to treat appropriately.

Built around a simulated consultation between a clinician and a patient (played by an actor), the role play was constructed based on real patient insights to highlight their needs and expectations and offer clinicians practical tips to address these.

This innovative training format, which allows the audience to step into a real-life scenario, led to a change in behaviour for attendees - who have modified the way they communicate with patients, how they try to understand their needs and concerns and how they approach decisions around treatment.

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Thyroid disorders are a problem. They’re all too common but massively underdiagnosed, making life miserable for millions. As the leading provider of treatments, Merck wanted to show the world they were tackling the issue of poor diagnosis and briefed us to raise awareness of this misunderstood disease. Simple, right?

Unfortunately, there was one major issue. Thyroid disorders are kind of, well, dull.

Fighting for attention against hard-hitting campaigns about the obesity epidemic, mental health reform and cancer care felt light a losing battle. Our challenge was that we were just yet another obscure awareness day.

Thank goodness we didn’t need to compete with the coronavirus crisis!
So we tried something different - something simple. We’d seen it done well in other sectors, but never in ours. We introduced the world’s first thyroid emojis - imaginatively called thyrojis - that people could tweet, download, send and share to spread the message about thyroid disorders.

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We established a global cross-functional program, the Athena Program, to drive agile acceleration at global scale. We developed Athena as a truly global and cross-functional effort across GTM, Commercial Operations, Brand Teams, Medicine, Market Access, Patient Advocacy, Regional Operating Units, IT, Corporate Communications, HR, Legal and other enabling functions. We ensured we were actively understanding and anticipating the needs of our customers in the unusual and uncertain times of the Covid-19 pandemic, and thoughtfully addressing their needs in order to support them. We facilitated a strong dialog and sharing of actions, success stories and learnings with and among different teams and markets, particularly as some of them were further along the ‘Covid curve’ and therefore uniquely placed to share experiences via regular global virtual discussion forums (initially on a weekly basis, and subsequently bi-weekly). As is the nature of agile transformations, Athena has been evolving in scope, structure, objectives and intensity based on the needs of customers and markets

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Initially, Agile was launched in Roche Diabetes Care (RDC) at a regional level to better address disruptive forces within Diabetes Care. A team of 63 regional RDC participants were invited together to understand more about Agile. From this team of 63, five Regional Agile Team packs (RAT packs) were set up, each assigned with an Agile project that had a basis in discovering customer needs. These teams became energized and were bought into this new way of working such that they immediately inspired many, many other colleagues in their own countries across our region. Following the success of this, and owing to the appetite across the whole organization around Agile as a philosophy, we recognized that we needed to really bring Agile to life in the UK and Ireland. Two of those 63 were from the UK, they felt inspired to share their learnings to influence the senior leadership team in the UK to begin the transformation journey to make Agile visible to the organization and get people excited about it. To support them, we created a pool of Agile coaches in the UK that were carefully selected through an innovative nomination process. Because it was important that the coaches were passionate about Agile, we invited anyone who was interested in Agile from within the organization, no matter what level they operated at, to put themselves forward with a three minute creative video sharing with us why they should be nominated as an Agile coach. Their goal is to make Agile visible to the organization and get people excited about it, with a focus on helping people to appreciate how working in an Agile way is different to traditional working practices, but also really illustrating and highlighting to people the benefits of it.

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The Global Microbiota Summit (GMS) is a Sanofi CHC annual standalone. For this event our goal was to move away from the typical activation of 1-day event, and instead create a customer experience (CX) around the event where HCPs would engage with the content through different channels, geographies and formats before, during and after the event. The objective of the 4th Global Microbiota Summit event was to continue to position Sanofi as an authority in probiotics among the HCP community by: A branded generic company transforms its services through a new educational interactive platform with personalized customer experience.

• Increasing understanding on the emerging role of gut microbiota in medical conditions within and beyond the gut.
• Drive discussion on the emerging evidence for probiotics and prebiotics in gut microbiota modulation and relevant conditions
• Establish a network of international scientific experts in the fields of gastroenterology, allergy, immunity, mental health, metabolism and nutrition
• Develop educational content for meaningful engagements with local scientific leaders

In addition we aimed to break the silos by bringing the HCP extended team (HCP-X), which is a self-managed team that works as an internal incubator or strategies, ideas and innovative pilots, comprised by team of experts in HCP Marketing (called HCP-Xperts) from the countries who help steer the HCP strategy, find and pilot innovative projects as well as upskill the CHC organization in the understanding of HCP engagement. For the GMS 6 countries were engaged in the MCE planning and executing

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Ecopharm is a brand generic company based in Bulgaria. It has a wide portfolio with numerous products in different life-stages. To stand out in Ecopharm implemented digital educational activities in its communication mix and integrated its marketing, sales, and medical divisions more closely to align behind the company transformation. For this Ecopharm uses the platform of CredoWeb. CredoWeb transforms communications with HCPs. The platform offers numerous digital tools in different formats, managed by one single point including pages of companies, products and people, virtual events with livestreaming and on-demand video content, e-learning courses and tailor-made remote detailing, video calls, content sharing according to specialty and interests, as well as patient support activities. CredoWeb delivers measurable value through a BI Tool providing analytics for the digital activities and behavior of HCPs and their impact on the outcome. All this, fully compliant with all pharma regulations through pharmacovigilance tool specifically designed for the industry.

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Pfizer believes that Key Account Management (KAM) is critical to ensuring long-term reputational and commercial success, whilst also supporting our customers as they strive to deliver the highest quality of care to their patients. Following an internal research project that highlighted the need to improve the understanding and application of KAM best practices, Pfizer established a Key Account Management Center of Excellence (KAM CoE). The KAM CoE was created to provide consistency in language and processes, support the business to build expertise and capabilities in KAM, encourage the introduction of identified best and future practice, and ensure that all market teams are prepared to engage with their Key Accounts as effectively as possible. The strategy and application of KAM aligns to true KAM best practice; however, the KAM CoE has built specific models and frameworks that are suitable for the environment we operate in and provide guidance for tailored execution at the local level.

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365 Days is a loyalty mobile application that has been developed for Bayer Turkey's consumers with a fundamental ecosystem-based commitment. With this application, users can earn points and receive various awards by uploading the slips of the Bayer products they purchase, at the same time users can also find up to date health informations in the aplication. The aim here is to provide the consumers with regular awareness of health protection and awareness about healthy living. There are also different sections within the application that aim to improve the quality of life of individuals and encourage them to live healthier. Application is integrated with Apple and Android Health programs and health data is retreived and rewarded with points. For example, with the “Step At Earn” module, the consumer collects points based on the number of steps taken and can then use these points again for health-related

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Practical pilot for OI patients of a patient-driven health care blockchain network with app (PGO) for safe sharing of personal health records. Possible thanks to the private/permissioned blockchain setup. With this setup we have a consolidated and extremely safe repository which offers a care ecosystem for an undisputed and holistic medical history of patients. By setting up a decentralized healthcare data environment and by connecting key healthcare stakeholders directly with patients while maintaining patient sovereignty. Personal Health Environment (PGO) app that aims to focus on the patient and to promote both personal care and broader research. This is envisaged through a personal application based on blockchain technology. The PGO makes it possible for patients to generate, upload, manage and share data with other parties. The idea is that patients can manage and exchange data and information via the blockchain technology in an autonomous, safe and efficient way.

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CareRing is an internal community for Roche employees who are patients or caregivers. CareRing allows them to connect with each other and to join groups of their interest (at the moment more than 20 groups). CareRing also facilitates the connection between Roche teams and patients/caregivers and brings them together for co-creation and insights projects.
Starting this experimental initiative was risky and required persistence and tenacity. Similar projects have failed or been objected to by legal departments in other organisations because of concerns around privacy and sensitivity of data. In Roche many people were enthusiastic about “Connecting our Lives with our Science”, but also worried by data privacy. Having our Legal teams onboard from the start helped us overcome these concerns. We were able to launch at the end of January 2020. Since then more than 700 members have joined globally. In our journey to be truly patient centric, we need to understand the experience of patients and their support network; the CareRing community allows us to do this rapidly and work in a simple and agile way to facilitate co-creation and prototyping. We of course recognise that this is a complement and not a replacement to broader collaboration. The results so far have shown that this can give early indications and signals that can then help us to be better informed when we approach the external patient and caregiver communities.

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MyStudyWindow (MSW) is an experimental initiative co-created with patients. We co-created the patient engagement platform based on feedback from patients in Japan, China, the United States and Germany. We believe that our user experience for patients is dramatically different than other platforms in the industry based on its look and feel designed with patients and their current experience with other online websites (etc. shopping, booking and social media). This is a significant departure from the general user experience from many other clinical platforms. MSW’s focus is to ensure the patient has a seamless experience. They have a one stop platform that will allow them to learn and match to trial opportunities, find out about what previous trial results and summaries have occurred as well as understand how research is conducted. Furthermore the platform will allow the feedback of patients on our studies on their experience, allowing patient feedback to be captured in future study design as well as part of our core datasets for the development of future clinical programs. These features in one solution make MSW unique as we feel there is no other sponsor led effort that is capturing this in one unified system that is connected for this end to end experience. Our launch has been welcomed by patients who have experienced the platform. This aspect is the most important for our team. At the heart of this digital patient engagement footprint for our company is focus that MyStudyWindow is a Platform for Patients powered by People.