Päivi Salminen
Communication Strategist
Salumedia Labs
Few weeks ago, I read an article from WIRED magazine about the emerge of telehealth in palliative and hospice care. The article explains that due to the current COVID19 pandemic palliative care doctors have started to have talks about disease prognosis, treatment and death with the patients and family over Zoom calls, and it has turned out to work well and have its benefits compared to normal face-to-face consultations. [1] However, I think technology can help more in palliative care than by just having telephone calls.
Palliative care is specialised medical care for people living with a serious illness.
Patients, caregivers and clinicians have all different needs that can be helped with technology.
Regardless of the disease, patients with a serious chronic illness lack of information and personalised education on their condition, different ways to self-manage symptoms, and tools for emotional wellbeing. Family members who take care of the patient lack of information and education on how to provide physical and emotional support to the patient, and help to cope with emotional wellbeing such as stress and guilt, not to say the progressive social isolation as the disease progresses and the care needs become more time demanding. Also, healthcare professionals lack of communication channels with patients and caregivers, and access to up-to-date patient data for follow-up.
Let me give you an example: This month (June 2020) is the Migraine and Headache Awareness Month. I have been suffering (with the emphasis on the word ‘suffering’) from migraine for over a decade now in a way that there are days when I am not able to work and there are occasions when I cannot join the family time. Around 4 years ago I downloaded to my smartphone a migraine mobile app, and it changed my life. Now I have in one place a record of my migraines, their length, intensity, and my medications. Before the app, when I went to see my doctor, I didn’t remember exactly how many times a month I had migraines or the pain-level. Now all I need to do is to check the statistics from the app before my appointment, and I can explain with certainty and with details what I experience during a migraine attack. Through the app I have also learned what triggers the migraines and the symptoms I get when a migraine is coming, so that I can take the medication when I feel the first symptoms and that way, I can prevent the worst from happening.
Likewise, a good mobile solution can provide both physical and emotional support, educational content and disease self-management skills for patients in palliative care and their caregivers. Also, the same mobile solution can be the connection between the healthcare professional for understanding better the patient and supporting in better decision making.
Nowadays, we have at our fingertips hundreds (if not thousands) of mobile apps under the “health” tag available in the app marketplace. We can find apps that claim to be supportive when controlling your sugar blood levels, quit smoking, reduce stress, improve sleep quality and many other health conditions. Some of them are built upon scientifically validated knowledge, but only a few have made the grade of achieving real world evidence about their real impact on the user’s health status after undergoing rigorous clinical trials. These few apps are usually certified by official regulatory bodies as medical devices after completing comprehensive assessments and usually work as expected.
But we need to be aware that there are many other “health” apps out there that claim to bring health benefits without a trace of scientific validity and, even worse, may lead to a worsening on the user health status. Most of them address pseudo-scientific/miraculous approaches to lose weight, natural remedies for all kind of ailments and even prescribe exotic oils or hypnosis to cure cancer. [2]
How to recognise a good and trustworthy health app? Here is a brief list of things to check before you hit the download button:
1. Check the number of downloads In general, the more downloads the app has, the better it is. Applications need users to detect all the bugs and errors, which can be later on fixed to improve the quality.
2. Check the ratings and reviews
What is the average rating? Are there more good reviews than bad? What are the general complaints about? If the majority of reviews are bad, the app doesn’t probably work well.
3. Check the functionalities If the app promises to perform medical diagnoses, don’t trust it. Leave disease diagnosis to healthcare professionals. Does the app claim to treat health conditions like pain using smartphones’ vibrations? Better skip it.
4. Check who is behind the app
Was the app developed by a company or by an individual? Do they have any affiliations to medical professional(s), hospital(s) or patient association(s)? Have they published any studies in peer-reviewed journals? Based on this background check you can decide if the advises from the app are trustworthy or not.
Fortunately for the end users, regulatory bodies around the world are taking actions to avoid “bad” apps reaching the market, and even the major service providers such as Google and Apple have agreed to undertake these policies and enforce them before releasing the apps in their marketplaces, which will keep us away from frustrations and potential harms derived from fake hair restorers sellers, or curing diseases or migraines in this digital souk.
References
[1] Sara Harrison. When Doctors and Patients Talk about Death over Zoom. Available at https://www.wired.com/story/when-doctors-and-patients-talk-about-death-over-zoom/
15.6.2020. Wired.
[2] Giunti, G., Giunta, D. H., Guisado-Fernandez, E., Bender, J. L., & Fernández-Luque, L. (2018). A biopsy of Breast Cancer mobile applications: state of the practice review. International Journal of Medical Informatics, 110, 1-9.