Receiving a diagnosis for a chronic illness or a life-altering, life-limiting condition can feel like having the wind knocked out of you. Unfortunately, many of us have been there. As a patient, you are thrust into a sea of uncertainty and confusion. You’re often overwhelmed with a mix of strong emotions and don’t know how to move forward, while your mind and heart are racing. As a carepartner, you may feel completely caught off guard by your loved one’s diagnosis; you are unprepared and unsure of what lies ahead but know that somehow you have to find a way to support your loved one.
One of the first things we as patients and carepartners do is research our diagnosis and circumstances to determine the next steps. Many turn to the Internet, searching for tools and solutions that may help with their new reality and new life with their diagnosis. “Is there an app that helps with understanding my diagnosis and treatment options?” “How can I divide and conquer caregiving tasks while managing finances – can technology help with that?”
We soon realize that there are thousands of health and wellness apps to navigate. It becomes clear fairly quickly that there’s no easy way to know which apps are safe, reliable, or will use our data responsibly. Why on earth – with everything else we have going on – do patients and carepartners have to stress about this?
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It’s important not only to recognize these struggles but also to understand what patients and carepartners want and need from technologies when making critical healthcare decisions – and then make those apps easily available.
Enhancing healthcare outcomes with quality apps
There’s no shortage of poorly designed apps. It’s frustrating. Patients or carepartners often get to a point where they want to use an app; they decide to take charge and be engaged. However, once they open the app, the interface is confusing, it doesn’t meet their needs, or they can’t easily access information. Frustrated and angry, they give up and say “I can’t use this.”
We need apps that have been tested with real users to ensure they are intuitive and easy to use. The apps also need to be designed to be inclusive of different needs including patients with disabilities, different levels of tech literacy, and diverse needs.
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Fostering trust and reliability with an app
Trust and reliability are critical as well. Our health data is sacred and must be protected, not just from hackers, but from companies that might misuse it or exploit it for profit. And let’s not forget the potential consequences if a health app gives you bad information – it’s more than just an inconvenience at that point, it could have real implications for your health.
We also need apps that protect our information. A recent community-based study from The Light Collective clearly highlighted this issue; most notably:
- 74% of respondents are moderately to extremely concerned about unauthorized sharing of their personal health information.
- Over half 53% would stop using a website or app if their health information were shared with advertisers, while another 25% would reduce their usage
The stakes are high and our personal information is sacred. Prioritizing trust and transparency is necessary.
Ensuring informed healthcare decision-making
Finally, imagine following an app’s advice to manage a chronic condition, only to find out later that the advice was based on questionable science or no science at all. That’s not just frustrating, it’s dangerous.
We need to establish a set of quality standards for developers to ensure their app is built on a solid foundation of evidence, vetted by a third party. “Proof” could include peer-reviewed research, clinical studies, rigorous data analysis, and anything else demonstrating the app’s effectiveness and potential impact on health outcomes.
This would substantially help narrow down good products from the bad – and mitigate the terrifying scenario where a patient or carepartner uses and listens to an app that gives inaccurate information.
How the industry is responding
The good news is that patients and carepartners – along with their struggles and needs – are being heard.
One recent, significant advancement was the launch of the DiMe Seal – a symbol of quality and trust, awarded to digital health software products that demonstrate performance against a comprehensive framework of standards and best practices. It’s essentially a stamp of approval that helps patients and carepartners cut through the noise and choose apps they can trust.
The CARIN Alliance also issued a Code of Conduct for Consumer-facing Applications, outlining how consumer-facing applications (not covered by HIPAA) should use, manage, and exchange personally identifiable health information. This provides a foundational set of principles for how healthcare organizations can share data with consumer applications.
Ultimately, we need to help arm patients and carepartners with greater transparency to make informed choices about the technologies they invite into their lives – especially when those technologies involve something as personal as their health. We must continue to advocate for technologies that meet standards and best practices in multiple areas, including evidence, usability, privacy, security, and equity.
By doing so, we can give patients and carepartners the ease and confidence they deserve when selecting an app and making healthcare decisions throughout their treatment journeys.
Editor’s Note: The authors are are members of the independent governance committee for the DiMe Seal.
Photo: tadamichi, Getty Images
Dr. Cordovano is a co-founder of Unblock Health, a SaaS company that leverages digital tools to ease time consuming tasks for patients and their families. She has over 25 years of experience as a patient advocate and public speaker to elevate the patient's voice in bringing improvements to the healthcare ecosystem. She received a BA in Biochemistry from Drew University and a MS and PhD in Biochemistry from Albert Einstein College of Medicine. Dr. Cordovano serves as the Digital Medicine Society's Patient-In-Residence.
Dr. Zanetti is a triple board-certified physician in clinical informatics, family medicine, and preventative medicine. He currently leads all AI efforts for the 4th largest network in the VHA and is a Professor of Digital Health and the Director of the Digital Health track at the College of Osteopathic Medicine at Rocky Vista University. He received a BA in Psychology from University at Buffalo and a DO from the University of North Texas. He has received training from Harvard Kennedy School, Harvard Business School, and Dartmouth College.
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