Austrian first responder and first aid app.
“The Free App (for Android and iOS) of Arbeiter Samariter Bund Österreichs helps with first aid. In an emergency, instructions can be found, which guide the first responder step by step with images and text.
From protection at an accident site, to how to resuscitate after a cardiac arrest, the app provides vital tips.
National and international emergency numbers can be dialed with the push of a button. Now you can also display the location of the nearest defibrillator on a map.
The app can be downloaded for free from the iTunes or Google Play store and is optimized for smartphones and tablets.
Of course, the app does not replace a first aid course, but it can provide the security in an emergency to help quickly and without hesitation.”Arbeiter-Samariter-Bund Österreichs, the Austrian first responder and first aid not for profit organisation which developed and launched the app. | http://bit.ly/2AzXZ63
App to help people with adrenal insufficiency manage their condition and get appropriate treatment in emergencies
“The Adrenal APP helps the patient ensure that crucial medical information is available at any time of the day or night, wherever the patient and his or her smartphone are together.
The app helps to collect and access this crucial information.The app on a smartphone makes it possible to explain instantly that the patient has an adrenal disorder and that he is dependent on hydrocortisone.
This means: “inject first, talk later”, and that is an essential instruction for the ambulance crew and for the staff in the emergency department. Importantly, they can verify this in the (Dutch) ambulance crew’s Protocol for Adrenal Insufficiency.”Johan G Beun, Co-ordinator BijnierNET/AdrenalNET, a virtual network of patients, healthcare practitioners and informal carers, which developed the app | App information submission to myhealthapps.net
Diabetes management log.
The AliveCor® Heart Monitor: Mobile ECG device that,provides individuals with the ability to track heart health anywhere, anytime at an affordable cost.
“The ‘AliveECG’ works in conjunction with the free AliveECG app and is designed for medical professionals, patients and health-conscious individuals to record, display, store and transfer single-channel electrocardiogram (ECG) readings. These recordings could be saved on the mobile device or shared with others (such as your doctor) via email. AliveCor’s Heart Monitor has been used in several clinical trials, and demonstrated accuracy and efficiency to produce a single-channel rate-and-rhythm assessment. Arrhythmia Alliance members have the chance to purchase the app with an exclusive discount of £5, using voucher code ‘hrc2013a’ when bought from Amazon. A percentage of the sale will also be given to Arrhythmia Alliance.”
Arrhythmia Alliance (AA), UK | http://bit.ly/1nlLnCa
App designed for carers and families of people with ALS (Amyotrophic Lateral Sclerosis)/MND (Motor Neurone Disease).
“Family members of people with ALS become increasingly worried during the disease process and regularly become overloaded.
ALS Center Netherlands developed an app to support relatives of people with ALS. Unique to this app is that it is information from 'peer to peer’; people who have experienced the same will share their knowledge and experience via video messages.
The app 'ALS Naasten, tips & info' can be downloaded for free from the Google Play store and Apple app store.
The app also offers the option of self-monitoring.
In the app, the person caring can keep track of how he or she is doing on a daily basis using a score. If the carer regularly fills in how they feel, they will gain insight into the course of their mood and what influence it has. This gives more sense of control over the situation
A carer of an ALS patient can download the app on their own initiative from the app stores, but healthcare professionals, such as rehabilitation doctors and social workers, can also actively offer the app to loved ones at an early stage.”ALS-Centrum, which helped to develop the app for the patient group Stichting ALS Nederland | https://bit.ly/3bK07cJ
App providing information on Alzheimer’s Disease, primarily for clinicians, but also including support for patients and carers.
“The free Alzheimer’s Association® Alzheimer's Disease Pocketcard app puts reliable information and assessment tools at your fingertips.
Contains information on detecting, treating and managing arthritis.
Mobile website to help people self-manage their asthma
“Asthma Buddy has helped hundreds of Australians manage their asthma for many years. We hope this new useful tool can help you take control of your asthma and improve the quality of life for you and your family.”
As a leading organisation for asthma care, the National Asthma Council Australia promotes best-practice care to people with asthma and their families.
…“Asthma Buddy is a digital Asthma Action Plan that lives in your pocket,” said Siobhan Brophy, Chief Executive Officer, National Asthma Council Australia.
“You can refer to it to know what daily asthma medication to take. It will also help you recognise if your asthma is getting worse and give you advice on what you should do in response.
…We designed Asthma Buddy with end users in mind,” We know mums always have a million things on the go, so we want to help them stay on top of their children’s asthma management.”
The launch of the Asthma Buddy mobile website is funded by GSK Australia. The National Asthma Council retained editorial control.The National Asthma Council, the Australian charity which developed the app. | http://bit.ly/2zmNKEX
First aid app for children and babies
“This free app provides simple, easy-to-learn skills to help a baby or child in a first aid emergency.
It is packed with useful tips, animations, and video clips. You can test your knowledge using the app’s built-in first aid quizzes. There is also a handy device to record your child's medication needs and any allergies.
The information you need is all hosted on the app itself, meaning no internet connection is needed, making it fast and easy to access.”Red Cross UK, developer of the app | http://bit.ly/2KLCgeK
Diabetes management app intended to simplify diabetes management, and to be used by adolescents and younger people with diabetes.
App designed by a patient group helping people adapt to life after breast cancer treatment.
“I have found the BECCA app to be inspiring and full of helpful advice, packed with lots of useful information and suggestions.
A must-have for anyone to help them move forward after breast cancer treatment.”Betty Hart, cited on the charity’s website as a person who has experienced breast cancer and used the app. | http://bit.ly/2xSxs5D
Assesses whether a user might be at risk of blackouts.
Tool to track bladder health in both men and women.
Allows a user to record diabetes-related personal information, including blood glucose levels, carbohydrate consumption, and medication.
“BookSmart for home allows parents and caregivers to access a library from their mobile phones so they can support their children’s learning after the school day or when physical schools are not in session. BookSmart starts with a free base collection – 75+ great local and international books suitable for young readers and their parents…
…These books support the learning and socio-emotional development of children ages 3 to 12 years. The collection includes books in Arabic, English, Hindi, and Spanish. Books can be read online or offline to save on data costs.”
Provides information about breast cancer, and about treatment of the condition.
App for people at risk of or diagnosed with bowel cancer
“In the era of personalised medicines and oral chemotherapy taken at home, Bowel Cancer Australia is getting Aussies ready for the future of patient care with a new bowel cancer app….
The comprehensive bowel cancer app…provides easy access to accurate information about bowel cancer, its prevention, diagnosis and management.
"Our bowel cancer app is responding to the changing needs of bowel cancer patients and their families or carers…For example, as more oral chemotherapies become available enabling people to receive treatment at home, we expect to see a shift away from written patient treatment diaries to online diaries that can then be emailed to the patient's specialist."
"We've also designed the app to be easily personalised. It has the capability to store screening reminders, treatment and mood diary entries and even record notes from medical appointments."
UPDATE: Bowel Cancer App 2.0
“The updated Bowel Cancer App 2.0 retains the comprehensive bowel cancer content frequently accessed in the first version of the app including the ‘Need to Know’, ‘How to Test’ ‘Living With’ and ‘Need to Ask’ sections, but also offers users additional benefits previously unavailable.
A new ‘Motivate Me’ feature enables people to monitor their diet and lifestyle on a daily basis as one way to help reduce their bowel cancer risk. Users can also connect one-to-one through the App as part of Bowel Cancer Australia’s Peer-to-Peer support and buddy network, Australia’s only national bowel cancer support group for patients and loved ones.
Other valuable features include screening tips and tools, a list of questions to ask throughout the patient journey, a customisable treatment and mood diary, recipes and a meal planner.
Consistently featuring in the top 100 medical apps in both the App Store and Android Store, the Bowel Cancer Australia App provides users with answers to questions about bowel cancer which many people feel uncomfortable asking and continues to make it easier for people to access relevant bowel cancer information.”Bowel Cancer Australia, the patient charity which developed and updated the app. | http://bit.ly/2QgTtDW
App for parents with children under five to help them deal calmly with problems and frustration.
“For some kids, managing everyday feelings can be a big challenge. Apps like ‘Breathe, Think, Do with Sesame’ can model more productive ways to deal with emotions.
The app shows kids a familiar face from Sesame St having trouble with something such as tying their shoes or going to bed. The app helps kids realise that everyone has moments like this in their lives.
And it also shows them how to use calming exercises like breathing deeply along with a monster friend. That can help kids manage their frustration.”
An app for medical professionals to purchase, and then to pass on to patients who are living with a mental health problem.
Provides patients (and their carers and families) with information on up to three cancers (breast, lung and prostate), supported by interactive illustrations, photos and videos. Now only available via website. The app version is no longer supported.
Password-protected personal health records app.
Tools to help patients manage carcinoid and related neuroendocrine tumours (NETs)
“Living with Neuroendocrine Tumours (NETs) and Carcinoid Syndrome is not easy but two new features on the Carcinoid NETs Health Storylines App aim to make it a little easier…
… Zebra Tales presents real stories about real life experiences by people who may be just like you…You can read their stories online…or in the app
…NET Nutrition is a new nutrition tool made specifically for those living with NETs and/or Carcinoid Syndrome. Determining which nutrients are right for you while living with NETs can sometimes be challenging…
…Check in regularly for new articles that will help you manage typical diet-related symptoms and offer insights on conversations to have with your healthcare team.”The Carcinoid Cancer Foundation, the not for profit organisation for patient advocacy and support | http://bit.ly/2NhvGCx
…CareZone is a robust tool that will help caregivers organize everything from appointments and tasks to meds, contacts, and miscellaneous notes – all in one place. Customizable sharing of contents is a great advantage, simplifying communication and coordination between family members.
…Support seems to be readily available; I sent a question via email and received an immediate, very courteous and complete response.”Ann Napoletan, US carer and blogger | https://www.caregivers.com/blog/2013/03/app-carezone/
“Being a CF teenager:
Young patients with CF often do not have enough information about their illness and how to effectively fight it. Growing up as a teenager is not an easy process by itself. For cystic fibrosis youngsters, there are even more challenges to tackle. This age of defiance takes its toll and usually brings decreasing therapy adherence.
Building good habits and improving adherence:
Smartphones are more and more used in healthcare and self-management. The idea is to utilize the enormous potential for the target group which uses the smartphone extensively at every occasion. CF Hero focuses on building a long-term habit of daily exercises (inhalation and airway clearance). The mobile application enables good use of the playful design and psychological triggers to persuade teenagers to adhere to therapy willingly and so that they know why they should stick to it. It also helps to sideline the parents a bit as they very often play the role of a “watchdog” (as kids say) and transfer maximum responsibility onto the child.
…By using gamification, CF Hero improves the commitment of young patients to treatment. Inhalation is a “game” for which virtual coins (little oxygens) are earned if the user sticks to the plan.
…The app collects data about inhalation therapy and physiotherapy (device, medicines and its doses, frequency) that can be further shared with healthcare practitioner who often doesn’t have regular feedback from the patient.
…With earned virtual oxygen coins and fulfilled inhalation plan, the user can enter interesting and funny comics stories that show real-life or fictional situations linked to CF. The reward-like mechanism of achieving these stories aims to build long-term habits but also educate the user about different aspects of CF life in an entertaining way.”Klub nemocných cystickou fibrózou, the patient group which developed the app | https://bit.ly/2UaS15Y
I know the people who have developed it and I trust them, very important with medical data of this nature. This App gets my seal of approval and a big thumbs-up from me. Well done CML Advocates Network.”Kris Griffin, patient advocate with CML | https://accesscmldrugs.wordpress.com/tag/app/
Designed for people with inflammatory bowel disease (IBD), such as Crohn's disease or ulcerative colitis, and who are scheduled to receive a colonoscopy.
App designed for people who have had strokes, providing practical support and information.
“With support from the Patient Centered Outcomes Research Institute (PCORI), this customizable mobile app has been developed for stroke survivors specifically based on their feedback and needs.
The app provides the stroke survivor or their caregiver with the ability to:
The app was developed through a collaboration with National Stroke Association, The State University of New York (SUNY) Downstate Medical Center, City University of New York (CUNY), and The Arthur Ashe Institute for Urban Health.”The US National Stroke Association, the not-for-profit organisation that helped to develop the app. | http://bit.ly/2QslTLl
“CoviDIAB is the new online application that will allow you to have clear, verified answers and personalised practical advice during this period of COVID-19 epidemic: to reassure you and support you in managing your daily life with diabetes.
This can be a supplement to all the advice that the French Federation of Diabetics (Fédération Française des diabétiques) sends you daily.…CoviDIAB is a web program which allows people with diabetes to stay informed in a reliable and validated way (daily updates), about their health.
This collaborative program is led by doctors and hospital carers, and supported by the AP-HP (Assistance Publique - Hôpitaux de Paris) and INSERM research teams (National Institute for Medical Research).
All the contents of this program have been validated by doctors and comply with official recommendations concerning the coronavirus.
CoviDIAB is a web application accessible on your smartphone, tablet or computer.No app or software to install: simply create your account online at: https://covidiab.fr/” Fédération Française des diabétiques, the patient group partner contributing to the app | https://bit.ly/3g1Xh4G
Allows the user to remain connected with the DAFNE Online support network for people with type-1 diabetes who have attended the ‘Dose Adjustment For Normal Eating’ (DAFNE) course.
Diabetes management app for people with type-1, type-2, gestational, latent-autoimmune diabetes of adulthood (LADA), or secondary diabetes.
Training and educational app for use with the Dexcom 7 glucose-management sensor.
Diabetes data-management app that allows the user to log and track factors which influence blood-sugar level.
Diabetes diary for recording and tracking blood-glucose readings, carbohydrate intake, and insulin dosing.
Allows a user with diabetes to track A1c, blood-glucose levels, blood pressure, food intake, medication, weight, etc.
Logs blood glucose, blood-fat and blood-pressure levels, calories, carbohydrates, HbA1c, insulin, ketones, and weight.
Diabetes logbook that allows a user to record and monitor blood pressure, carbohydrate intake, exercise regimes, glucose readings, insulin injections, lab results, medication, pulse, temperature, weight, and other vital statistics.
Carbohydrate-/meal-logging app and medication calculator.
Reminder to take medications on time.
Designed to help the user manage medication compliance.
App to help families with Dravet Syndrome, a rare form of epilepsy that begins in infancy.
The first video game in the history of Dravet syndrome. Together with our friends from CEINPRO, we go a step further in the diffusion of Dravet syndrome.
Now, any user in the world can download Dravet Dream, an interactive game in which the main character is always accompanied by a butterfly overcoming different challenges related to this disease.
The game is in English, Spanish and Basque, it is free and you can download it for both Android and iOS devices.”
Features the activities of Belgium-based multi-stakeholder organisation specialising in cancer, the European CanCer Organisation (ECCO).
Wellness app to help women manage endometriosis symptoms.
“Stage IV Endometriosis warrior Melissa Turner developed Endo Empowered to provide women with the tools she used to improve her endo experience. There are dietary and lifestyle suggestions to help naturally manage endo symptoms, as well as a 21-day wellness challenge. (Going to bed before 10:00 PM or eating something green each day are just a few of the to-do’s.) Another popular feature? Daily self-care reminders, which can be set to any time, in any time zone. “The Endo Empowered platform was inspired by a strong desire to help women around the world by empowering them with tools, support, and hope to manage endometriosis and make life a little easier,” says Turner.”Bethanne Black, Endometriosis Foundation of America | http://bit.ly/2PajIu3
Diary that allows the user's epilepsy-relevant medical history to be logged.
Helps people with epilepsy manage and improve their own health via seizure-management tools.
Intended to help people with epilepsy manage their condition, together with relevant medical professionals.
Helps to track and record haemophilia-A factor-VIII infusions.
Catalogue of 80,000 formulations of 18,000 drugs available in Italy (and Europe). Searchable by characters, types of medicine, manufacturer, side effects, interactions, and others.
App enabling women to track their periods and specific symptoms of endometriosis and other reproductive diseases.
“After suffering years of unexplained symptoms and multiple hospital visits, Flutter founder Kirsty Curry was diagnosed with endometriosis at age 28. Soon after, she sought on a mission to help other women more quickly navigate the road to diagnosis. Curry and her husband, both app-designers and developers, created Flutter. The app comes complete with a community to share experiences with as well as a handy symptom tool that can help users better advocate for themselves in the doctor’s office. “I also wanted an easy way to share a journal with your doctor, so we added an export tool, says Curry, who is also a board member for The Endometriosis Foundation of America. “The journal allows detailed symptomatology tracking that’s specific to endometriosis, which may help with screening and symptom management. And sharing the tracker with your doctor can eventually help with diagnosis.”Bethanne Black, Endometriosis Foundation of America | http://bit.ly/2PajIu3
A tool to help people at risk of osteoporosis to calculate their bone fragility.
“GDm-Health has the potential to positively affect patient care, because people with gestational diabetes would be better able to interact with their healthcare team. GDm-Health removes bias in patient reporting of blood glucose levels, helping to improve trust.
It can potentially decrease unnecessary hospital visits and provide the midwife with more information for clinical decisions.
GDm-Health could improve patient health outcomes. It is unlikely that using GDm-Health would significantly effect on family, work or home life any more than usual blood glucose monitoring.
The only possible drawback could be anxiety around personal data handling, but this could be mitigated by assuring users of robust security.
The system is more likely to benefit patients who embrace new technology, particularly those who already use smartphones. For many users, especially those very familiar with smartphones, no special training would be needed.”
Expert contribution from the patient organisation to a medtech assessment paper by the UK National Institute for Health and Care ExcellenceDiabetes UK, patient organisation that cares for, connects with and campaigns on behalf of all people affected by and at risk of diabetes. | http://bit.ly/2G0nNxE
Complementary logbook app that, when combined with the developer’s proprietary ‘Sync cable’, and various manufacturers’ compatible blood-glucose meters, saves a user with diabetes from having to manually enter blood-glucose readings.
Guide for people with diabetes (and their carers) in the emergency administration of the Eli Lilly product, Glucagon.
Diabetes management app that allows blood glucose, blood pressure, body-mass index (BMI), carbohydrate intake, exercise, HbA1c, insulin and medication doses, and weight to be tracked.
Data-storage utility for people with diabetes.
Diabetes management app for recording and tracking blood glucose, food intake, insulin and medication.
App for people living with HIV/AIDS.
“Designed for people who need to limit their fluid intake, especially people with hyponatremia, kidney failure, or heart disease.
Helps a user prepare for medical consultations and appointments by planning what should be said and asked, and by advising what sort of information should be brought to the consultation.
Offers answers to healthcare-related questions, according to condition, health concern, medication or symptom.
App designed to help people with heart diseases to manage their condition.
“The Heart Failure Health Storylines mobile app is created with input from people with heart failure and congestive heart failure (CHF) so that the right health tools are available to you. Now it’s easy to record your symptoms, vital signs, medications, and more. Choose what you want to track to build your own summary “My Storylines” to learn more about your health, and to share more – safely and securely – with your doctor about what happened between visits.
Choose from the following health tools to better manage and monitor heart failure:
Infusion log for people with haemophilia.
Helps people with diabetes to track and manage blood-sugar levels.
Contains a video on how women should properly check their breasts for cancer. Is approved by NHS Choices as being safe.
Allows a user to send anonymous photos of any skin condition to a dermatologist.
Headache diary that allows the number of headaches, their duration and severity, the degree of disability and impact, medication and usage, symptoms, and triggers to all be tracked.
App to help research early detection of Parkinson’s
“By downloading the iPrognosis app, you will donate data to the "GData" study, towards the development of early Parkinson’s disease detection tests. The iPrognosis app will record data from your everyday use of the smartphone, eg when talking on the phone or sending a text message.
Data recorded will be pseudonymised and uploaded securely on the Cloud when your phone is connected to Wi-Fi. You can choose what is being recorded and withdraw at any time.”
Medication reminder aimed at people living with HIV/AIDS.
Helps the user work out what medical condition they may have.
"Captures and records the user’s pulse (beats per minute), with a visual trace for evidence of atrial fibrillation (AF). Provides relevant information on why knowing the pulse is important (extend to AF). Enables comparison by the user of the recorded trace with examples of normal, tachycardia, bradycardia, and AF. Saves captured traces for future reference, for instance with healthcare professionals. Provides instructions at all stages of use. Enables sharing of traces via email and social media."Arrhythmia Alliance (A-A), UK patient group | PatientView survey, November 2013
Bi-directional conversion calculator for people with diabetes.
Visual consultation programme which aims to improve the chances of conception by bringing together the medical and spiritual factors that influence fertility.
App enabling people to assess if they are at risk of hepatitis and manage their liver health.
“Millions of Australians suffer from symptoms associated with liver disease with over 400,000 living with hepatitis B or hepatitis C.
Hepatitis Victoria introduces LiverWELL, a free interactive app that is a practical tool to help people optimise their liver health. There are many health apps around but they tend to be either for specialist clinicians or from those promoting a healthier diet.
LiverWELL has been informed and tested by people living with hepatitis.
“People with hepatitis and liver disease need practical tools that remind them to take their medications, schedule their appointments, record their test results and keep their personal health notes all in one place,” said Dr Nicole Allard, a general practitioner and specialist in hepatitis B. “The beauty of LiverWELL is that everyone with a mobile phone now has this option within their grasp and I will be recommending the app to my patients,” she said.
“Every week up to 6 Victorians die from viral hepatitis-related liver disease…and liver cancer is the fastest growing cancer in the country,” said Melanie Eagle, CEO of Hepatitis Victoria. “We need to tackle this health crisis head on,” she said.
“World Hepatitis Day is one of a handful of world health days mandated by the World Health Organisation precisely because hepatitis is such a serious and deadly disease,” said Jill Hennessy, Minister for Health in the Victorian Government. “The Victorian Government is committed to eradicating viral hepatitis in our community by 2030 and to do this we need clever and creative approaches. I congratulate Hepatitis Victoria on producing such a useful tool for people living with hepatitis,” said Minister Hennessy.
LiverWELL is now available for Android and Apple smartphones in English with the translation of main functions in Arabic, Chinese and Vietnamese.”Hepatitis Victoria, the not-for-profit organisation which developed the app. | http://bit.ly/2LFqwy6 (YouTube channel for Hepatitis Victoria)
Diabetes management app for recording and tracking A1c levels, blood-glucose levels, blood pressure, carbohydrate intake, doctor visits, exercise activities, insulin or oral medication, weight, and other medical records.
App designed to support patients in managing lung cancer from diagnosis through to treatment.
“The LUNGevity Lung Cancer Navigator is a customizable mobile app that puts your entire support network in the palm of your hand.
The app was created for lung cancer patients, family caregivers, and support team members to manage life after a lung cancer diagnosis. It helps you understand your diagnosis and provides tools and forums for asking questions, detailing symptoms, and managing medications. The app is a great way to communicate with your healthcare providers and to request support from friends and family.”Longevity Foundation, the US-based patient advocacy and research charity for lung cancer which developed the app | http://bit.ly/2PQexRu
One of the unique features of the Lyfe app is the Community section. It allows patients and support-givers to share their stories, ask questions and connect with others who are dealing with similar circumstances—locally, nationally and around the world.
Lyfe has insightful articles providing practical tips designed to help during all stages of the patient experience. It also includes information geared specifically to friends and family members who are providing help and support during this challenging time.”
“Do you have an allergy to certain foods and do you lack inspiration for new recipes? Then here is help. Download our new app ‘Food Allergy’.
This app is a recipe database that allows you with food allergies to sort recipes that contain ingredients that you cannot tolerate.
The app also includes features that allow you to share recipes on Facebook, share a list of your allergies by mail, and create a shopping list that can be easily adjusted to how many people are eating.”
All recipes are developed specifically for food allergies. The app allows you to click off your allergies and will then exclude recipes with the ingredients you cannot tolerate.
You will find recipes for breakfast, starters, soups, main courses, salads, desserts, cold cuts and bread.
The app is free and works for both iPhone and iPad.Asthma Allergy Denmark is behind the app, which is supported by the Ministry of Children and Teaching and lotteries.” Astma-Allergi Danmark (Asthma-Allergy Denmark), the patient association which developed the app. | http://bit.ly/2S08fhY
Improves doctor-patient communication by helping the user answer questions that the healthcare provider wishes to put to them.
App to access easy-to-understand information on each prescription medicine in Australia.
“Medsearch is a free app to help you find, view and save documents for registered prescription medicines included on the Australian Register of Therapeutic Goods.
The app means you can keep information about your medicines in one place and it also allows you to share information with family and friends.”Australian charity, Diabetes Australia | http://bit.ly/2Vr8EMA
Helps to manage medications by storing a list of the user's medicines, doctors and pharmacists.
“ ‘MedTracker’. It lists my medications, and gives a very audible reminder, even when in silent mode. It is a USA-based app, though, and it is also not very easy to use. If I want to skip a dose, for instance, it keeps reminding me I need to take the dose, even if I want to skip it.”Person with arthritis, UK | PatientView survey, August 2014
Patient registry app to record real world evidence from people with melanoma.
“Melanoma UK has been working with healthcare company Vitaccess to develop a digital platform to collect data from people living with melanoma….
…Participants use their own smartphone or tablet to complete questionnaires or surveys at their convenience. Data are immediately submitted to a central data platform; users of the platform can see and analyse the aggregated data in real time.
The platform will collect rich demographic and epidemiology data across all stages of disease, treatment, and beyond.
Initially, the platform with collect data on quality of life in people living with and being treated for melanoma in the real-world setting. To date, such data have been collected only in the somewhat “artificial” setting of clinical trials.
This study will help us to understand how people feel during what has become routine treatment, and afterwards. The pilot stage will collect data in the UK but we plan to extend data collection globally.
Participants benefit from monitoring and recording how they feel, and the platform provides a convenient way for them to share their data with friends, family and healthcare professionals.
Development of this platform has been collaborative: at the recent UK Melanoma Patient Conference, we canvassed future participants on the functionalities that they would have used. Based on this extremely positive feedback, features such as a daily pain diary, knowledge centre, consultation checklists and events timeline have been built into the platform.
Data will be available free of charge to academic researchers, and through a subscription service to industry.”Patient group which developed the app, Melonoma UK | http://bit.ly/2Fceu8s
App game to raise awareness of cause and impact of mitochondrial disease.
“Who do YOU want to challenge to be the new hero of the mitoverse?
Share the Mito Warrior app with one of your friends to see who can restore power to the mitoverse and to learn more about mitochondrial disease!”
Medication manager and reminder app for people with a mental health problem.
App to help people recover from a heart attack.
“After a heart attack, you're told to focus on recovery. Then you're left to figure it out. What are the next steps? Where do you find reliable information? How do you make good health habits and stick to them? Or keep track of medications and doctor's appointments? And with all that to worry about, how do you keep from getting too overwhelmed to move forward?
Those are just the kinds of questions that inspired the American Heart Association to develop My Cardiac Coach, a free mobile app that can help you find your way to a healthier future after a heart attack.
My Cardiac Coach is a personalized recovery toolkit you carry in your smartphone. It gives you anytime/anywhere access to everything you need, including:
“The app provides children and their parents with their own personal healthcare record which contains information about their CF. The app has been designed to allow children and their parents to keep together all the information that they may need to help manage their CF care.
The app has three different formats depending on the child’s age, namely 0-5, 6-11 and 12-18 years, and adjusts the phrasing and content to suit the child’s age. As the app was developed by the OLCHC CF unit, much of the content directly relates to how children with CF are managed at OLCHC. We envisage that parents and older children with smart phones will open the app while at CF clinic to access any clinical information or questions which have been logged over the past few months.
We think of the app like a storybook of lots of important information about CF that families can access whenever they need and this is why we called the app “My CF Story”. We hope that families will find this app empowering and that it will become an integral tool in managing their child’s CF.”Dr Des Cox, Consultant in Paediatric Respiratory Medicine, Our Lady’s Children’s Hospital, Crumlin, which developed the app with the patient organisation, Cystic Fibrosis Ireland | https://bit.ly/2UdzyWu page 11
“My IBD Care is an app developed by Ampersand in partnership with Crohn’s & Colitis UK, which allows people to track medication and symptoms, plus patterns of diet, sleep, exercise and pain.
It's a cloud-based dashboard which allows healthcare professionals, friends and families of sufferers of Crohn’s or Colitis to understand how well, between appointments, someone with Crohn's or Colitis is and how effective different care pathways are.”Crohn’s and Colitis UK, the patient group which developed the app | http://bit.ly/2sQG7UC
“This new app is really positive for anyone that is still working. It’s extended my working life really because…previously I was having to work around diary dates to get me to the clinic. Now I can test in the morning at home…I can test myself on the train going up and down from London….It’s given me quite a lot of freedom.”Martin Smith, patient with atrial fibrillation | http://www.inhealthcare.co.uk/resource/inr-self-testing-martin-smith/ Including recording of interview on Radio Yorkshire
“The Epilepsy Foundation My Seizure Diary is a self-management tool for seizures and epilepsy with a focus on self-monitoring and tracking seizures and other symptoms, managing medication and other therapies, recognizing triggers and health events that may affect seizures and wellness, and communicating with your care providers.
Use My Seizure Diary to also organize your health history, develop seizure response plans and help you remember medicines and other important information…
…The MY SEIZURE DIARY platform includes a fully responsive web application on diary.epilepsy.com as well as native iOS and Android companion apps.”
The App was initiated, designed and developed by patients for patients. Dystonia Europe has the 100% ownership of the project, the database includes collected data from users of the MyDystonia diary.”European Patient Forum | European Patient Forum, Position paper on eHealth, Dec 2016, page 12, http://www.eu-patient.eu/whatwedo/Policy/eHealth/
Portable health record that can be shared with doctors or anyone else involved in a user’s healthcare.
Information on diagnosis and treatment guidelines for many cancers.
“NCCN Guidelines for Patients®, patient-friendly translations of the NCCN Guidelines®, are meant to help patients with cancer talk with their physicians about the best treatment options for their disease.
The NCCN Guidelines for Patients along with one- to two- page NCCN Quick Guide™ sheets summarising key points in the NCCN Guidelines for Patients are now available through the mobile app.”National Comprehensive Cancer Network, the not for profit organisation that developed the app. | http://bit.ly/2NnVpsX
Information and support for patients, carers and clinicians dealing with Neuromyelitis Optica (NMO).
“Get the NMO basics with the latest in NMO information, videos, and answers to frequently asked questions.
Learn more about the latest scientific and medical insights into adult and pediatric disease, imaging, laboratory tests, and potential relationships of NMO/SD to other autoimmune diseases.
The NMO video library includes patient stories, questions about NMO, seminars from our NMO Roundtables, and more.
Stay up-to-date with access to fresh peer-reviewed research that have been made available and open-source.
Learn more about clinical trials, including how to participate.
Keep all of your NMO related notes and thoughts in one place.
Connect with all the NMO support groups that meet in person as well as online or through telecons.
Everything you need to help us with blood samples and/or clinical data donations for our Biorepository. Blood samples and clinical data are vital for NMO research.
Learn more about The Guthy-Jackson Charitable Foundation and connect with us on social media.
Browse this organized database of over 200 doctors with awareness and experience in NMO.
Access our popular patient resource guide.
In addition to native VoiceOver ability, you can modify font size and font thickness with accessibility settings.”The Guthy-Jackson Charitable Foundation, the US-based charity which created the app | http://bit.ly/2RLAOMv
MHA [Mental Health America’]’s 2018 mPower Award goes to Hannah and Charlie Lucas from Cumming, Georgia for the creation of the notOK App™. Hannah, 16, struggled with depression and self-harm last year, her freshman year of high school, after being diagnosed with a chronic illness that led her to be bullied and taunted at school. An idea formed in her head during her lowest moment: an app that would let people know she was not OK. With the assistance of her younger brother, Charlie, 13, the Lucas children got to work on the app idea which would become the notOK App™.
Aims to help people on oral anticoagulant therapy (OAT) to monitor and control their medication routine.
Helps people with diabetes manage their condition by tracking blood glucose, blood pressure (BP), exercise, food, medication, pulse, and weight.
Helps people to manage their stoma supplies.
“OstoBuddy is a super good app that helps you keep track of your stoma equipment. It's simply built up by clicking on a small `plus’ in the corner of the app and adding your products. And afterwards you can keep an eye on how much you have used and when.
When you add a new product, enter the brand name of the manufacturer, what type of product it is (plate, bag, etc.), model number, what amount of product you have when you bought it and when to have a reminder to buy new.
Then you can enter and specify when using a new bag, sheet etc. and even write notes if you have a comment. All the products you added to the app will appear on a list. Then you just cross which product you use, and then the app keeps track of the day you changed and how much you've left.
The app will even remind you when you are running out and stores contact information on the manufacturers so you can easily order new. All in all, OstoBuddy is really easy to use”Stomiforeningen COPA (Danish Stoma patient association) | http://bit.ly/2xYqaO6
“OurBrainBank is a non-profit dedicated to moving glioblastoma from terminal to treatable, powered by patients.
Our key tool is the OurBrainBank app which helps people manage their disease as well as provide much-needed data for medical researchers…
…As you progress, you may view your data at any time: access reports via the menu icon (bars at the top left of the app screen) and select ‘my reports’. Compare different symptoms and view your progress over time.
You may share your data with other people, including your healthcare team, so they can see how your symptoms may have changed. This may help you understand the relationship between your treatments and your symptoms.
The app allows you to self-track neurological function with games that test balance, ability to compare numbers, and speed of neurological function. They’re quite addictive!
The app can be used to track health data such as your weight, blood pressure, or blood sugar. There’s also a neat journal feature, so you can record how you’re doing.
We plan to publish our findings widely, sharing the insights gleaned from the aggregated data, and driving more research to crack glioblastoma.We encourage you to continue to participate after your first 100 days. Your input is crucial to the success of the mission — to turn GBM from terminal to treatable” OurBrainBank, the not-for-profit US patient group which developed the app | https://bit.ly/3bpP746
“Ovarian cancer has four main symptoms:
…If your symptoms are:
Tool to help patients manage chronic pain or sports injuries.
Designed to help medical professionals recognise the symptoms of Parkinson’s disease (PD), and then diagnose and treat the condition.
“With your help we at patientMpower have developed an electronic health diary (an “app”) which can be used by people with lung fibrosis to help them keep track of their symptoms and lung health.
The patientMpower app works on any smartphone or tablet device (like an iPad). The idea is that you use your mobile phone to keep a diary of various symptoms and other factors related to your lung health. For example, you can keep track of the number of steps walked each day or your level of breathlessness. If you have a connected spirometer, the breathing test information will also be recorded and the app can be used as a reminder to take your medicines each day. When attending clinic appointments, it may be useful to have this type of information to hand so you can tell the doctor or nurse about issues that may have been troubling you.
“A group of ILFA volunteers have tested the app with home spirometry in a user experience survey and given us useful feedback on their experience of the app. patientMpower want to thank these volunteers for their help in guiding us on how we can improve the app and its use with measurement devices (like home spirometers).”Article in patient group newsletter of Irish Lung Fibrosis Association | http://bit.ly/2AIf2Rk
App to help patients manage their electronic health records, including for kidney disease, diabetes and Inflammatory Bowel Disease (IBD).
“PatientView allows you to view, monitor and plot trends of your blood results as well as allowing you to view your clinic letters and upload your own readings such as weight and blood pressure.
This will help you understand more about your condition and how your lifestyle is affecting your condition, for example, you can monitor how well you’re adhering to your dietary restrictions such as salt, potassium and phosphates.
…Please, note that note all renal centres use PatientView and those that do not may not use all of its facilities.”GMKIN (Greater Manchester Information Network), a joint venture between patients with chronic kidney disease, clinicians and the University of Salford. | http://bit.ly/2Wur7Fk
You can view your history and trends…The history shows how you did on different tests and the trends show your baseline, performance, PD symptoms, fatigue and medication over time… enabling you to continually monitor your performance with respect to when you took medication for example. There is also a ‘diary only’ option which allows you to simply look at your PD symptoms, fatigue and medication over time.”Leah Mursaleen, Parkinson’s Movement, a patient group aiming to connect patient experience with scientific expertise | http://parkinsonsmovement.com/devices-and-apps/dont-worry-be-appy/
Reminder to take medications on time.
Reminder to take medications on time.
Simple, one-page, slide-bar app that allows a user to convert A1c level to estimated average blood-glucose level, and vice-versa.
Contains a trio of facilities for people with psoriasis (and their carers): a calculator to assess the severity of the condition; a questionnaire on the impact of the condition; and a newsfeed on dermatology subjects.
PTSD Coach provides service members, veterans, their friends and families with dependable resources they can trust. Many service members who experience PTSD symptoms can benefit from care and support, but some fear that they may be considered weak or that leaders or unit members might lose confidence in their abilities if they seek care. The information available through the PTSD Coach app can help service members and their loved ones overcome those concerns and obtain accurate information about PTSD and find the support they need.”Real Warriers Campaign, organised by the Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury (DCoE). The organisation collaborates with a civilian agencies and advocacy groups. | http://bit.ly/2lyqGMf
Tracks the user’s remaining amounts of medications, displaying a countdown of the quantities left, and indicating how many days, weeks, or months, remain of each medication.
Helps people with chronic kidney disease (CKD) or end-stage renal disease (ESRD) to record, track, and share their vital renal-health information.
Prescription reminder that alerts the user to the need to take a prescription.
“Now it is easy to record details and specifics about symptoms, medication, moods, and more. Choose what you want to track and see all the information you need to help you or your loved one who is living with schizophrenia and related disorders.
With SARDAA Health Storylines, all you have to do is tap an icon, swipe a screen, fill in the blanks. And fill in the rest of the story for yourself or for your loved one.
You can use the following Health Tools to better manage and monitor schizophrenia and schizoaffective disorder:
“The Alzheimer’s Association Science Hub is a free app that provides the latest news, information and expert views about Alzheimer’s and dementia research. As the global leader in Alzheimer’s and dementia science, the Alzheimer’s Association shares the latest research news and trusted perspectives, vetted by a team of scientists.”
Science Hub is the only app in its class dedicated to the rapidly evolving Alzheimer’s and dementia science:
App and VR game designed to crowdsource baseline data of normal ageing navigation skills to aid dementia research.
“People with dementia can face real challenges with navigation, and it’s a problem that can occur early on in the condition. However, we still don’t have reliable data on how navigational abilities can change in the healthy brain across life.
Playing the game for just a few minutes will provide this completely anonymous data to help improve our understanding of navigational cognition. We’ll create a benchmark to help determine what goes wrong in the brain for people with dementia.
Alzheimer’s Research UK is helping support the analysis of the data the game generates, which could pave the way for improved approaches to early disease detection, in turn helping improve people’s chance of benefiting from new or existing treatments earlier.”Alzheimer’s Research UK, the charity involved in developing the app and analysing the resulting data. | http://bit.ly/2Nwel3X
Diabetes logbook for recording and tracking blood-glucose levels, blood pressure, carbohydrate intake, and medication.
Skin-cancer prevention tool that provides an on-the-spot risk assessment.
The application provides an insightful and interesting way to provide useful information on sexual and reproductive health, including prevention, testing and treatment of sexually transmitted diseases, in accordance with valid scientific and professional knowledge.
Whether it's a risk check, a quiz of knowledge, information or recommendations, we believe everyone will find something for themselves. With responsible sexual behaviour and regular medical examinations, this is a good way to improve your information and your own knowledge to preserve and improve your sexual health.”Developers, including patient association Croatian Association for HIV and viral hepatitis | http://bit.ly/2swP8Bj
Spruce is an app developed by the British Liver Trust (@livertrust) to help people drink less frequently
“Unlike many other alcohol-related apps that try to get their user to do the impossible task of logging down every drink on a night out, Spruce is the first which focuses on the frequency of drink throughout the week.”
“Spruce users choose a weekly goal of three consecutive days of no drinking, and choose which days they will be ‘dry’. The user is then given gentle reminders on their progression, allowing them to monitor their intake and given ideas of non-alcohol activities to engage in.
For many people it’s easy to fall into the habit of having a drink most nights. Drinking even small amounts frequently is unhealthy and can lead to liver disease. But taking just three consecutive days off a week can reduce the chances of liver damage.
Three consecutive days is both achievable and beneficial; it helps people plan their week so that they can still socialise and have a drink if they want to, but are also aware that they need to take some time off drinking alcohol.
In our controlled test people who used Spruce were three times more likely (64%) to achieve three days dry than the control (23%).”British Liver Trust, the UK patient organisation which developed the app | http://bit.ly/2HI8VSa
App to help women build pelvic floor exercises into their daily routines.
“There are also apps to help. The one often recommended by physiotherapists is Squeezy, which costs £2.99, is NHS-endorsed and has an audio-visual guide to help you squeeze and relax. You can set reminders and personalise your exercise programme plus it will fit with a detailed programme that a physiotherapist may give you. Have a look at www.squeezyapp.co.uk for more information or visit the App store or Google Play.”Myra Robson, Senior pelvic health physiotherapist, writing for patient charity Bladder Health UK. | http://bit.ly/2L0qZKV
Users choose a theme they want to explore such as ‘perfectionism’ and 'comparing myself to others' and scroll through a list of associated symptoms and unhelpful beliefs. They can read or listen to short insights that challenge those beliefs.
The app allows users to share an insight with others, set up reminders to read or listen to it at a certain time of the day, and set up trigger alerts where the insight pops up on screen when the user goes to certain locations.”App library funded by the New Zealand Ministry of Health, and curated by the health website `Health Navigator’, which includes representation from patient groups. | http://bit.ly/2AJwd53
App and website for people with rheumatoid arthritis to identify how day-to-day activities affect their condition.
“Track what you do and how you feel on a daily basis – even when you’re on the go! The newly relaunched Track + React app can be used as a web tool on arthritis.org as well as on your smartphone via the app.
Track + React features a completely revamped free mobile app available for download for iPhone and Android devices that allows you to track key daily activities related to your rheumatoid arthritis (RA) wherever you are…
…Tracking certain activities throughout the day can be helpful for identifying health trends that may impact the severity of your rheumatoid arthritis.
This easy-to-use tool will reveal which daily activities are having an impact on you and your RA disease activity. You may discover that when you take a walk, you don’t feel as stiff the next day or when you are less stressed your mood is much happier.
You can track what you do and how you feel on a daily basis within six key categories:
The tool will calculate the information you provide and produce a graph so you can see overtime how your daily activities play into your health and arthritis impact.
There may be a connection between what you do and how you feel. You can also print your Arthritis Impact graph and share the results with your doctor, which may help get more out of your appointments.”Blog from the Arthritis Foundation, the non-profit organisation which develop the app and online tool. | http://bit.ly/2M17UcH
Allows a user to check for skin cancer by conducting self examination.
App to help people to identify and avoid triggers for urticaria (hives).
“The severity of Urticaria can vary. The spectrum ranges from a short and mild discomfort up to years of constant torture.
Also, the triggers for Urticaria are different from patient to patient. In some cases the trigger can be identified and easily avoided, in other cases it is never found.
The most important step is to identify the triggers and determine the individual sensitivity threshold. To do that it is essential to run a diary that helps to document the course of the disease.
This app will help those affected with it. Fewer relapses or a decrease in the severity of relapses, is already a success.”Global patient group which developed the app: “Global allergy and asthma patient platform” – (GAAPP) | http://bit.ly/2MQ9rz3
Toilet finder app.
“WC ASAPP is a geo-localisation app that helps people find a toilet close to them. General information about these toilets (distance, score, opening times, hygiene level, costs, etc.) is also provided. The app automatically takes you to the toilet of your choice. Users are invited to rate the toilets. You can also add new toilets.
Through crowdsourcing, the app will contain more and more toilets with useful information. The app was originally designed for people with inflammatory bowel disease, but the app is made available free of charge to anyone who wants to find a toilet quickly. WC ASAPP (developed by AbbVie) can be downloaded for free via Google Play or in the Apple App Store.”
Contains informational tools that can guide a user in making decisions about personal health.
27-question online questionnaire that assesses a user's risk of anxiety, bipolar disorder, depression, or post-traumatic stress disorder (PTSD).
Pill reminder with customisable features
“I use an app called 'Your Medicine 1-2-3 Pro' to track my medication dosage, timing, when I need to fill my prescriptions, and how often I'm using my PRNs (medicines that are taken as needed) ... my doctor asked me to track that. It's simple, hugely customisable, and I don't find it annoying.”
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