Suzanne Wait
Founder, The Health Policy Partnership
As digital tools reshape healthcare, trust and transparency are essential to ensure that technologies prioritise patients’ needs.
Digital technologies, AI and data analytics are embedded in almost every facet of healthcare. At their core is the understanding that patient data are shared to provide a comprehensive view of their health and care.
Data sharing brings considerable advantages for both patients and clinicians, providing a person-centred and integrated approach. For research, the potential to combine many data types and sources has facilitated advances in drug development, personalised medicine, epidemiology and other fields.
Like clinical trials, digital tools should be designed around patients’ needs,
not the other way around
A matter of trust
Being a patient makes you vulnerable. And that vulnerability may be compounded if someone lacks information about their diagnosis and care, doesn’t understand why different tests are being performed or feels powerless navigating a complex and fragmented health system.
Surveys suggest that patients are more than willing to share their data – as long as they feel confident it’s used for the correct purpose and with robust privacy and security protections.
Hence, information about how data is used and protected must be communicated clearly and transparently without jargon. The language used on any digital platform or app should be inclusive and cater for different levels of ability and digital and health literacy.
Like clinical trials, digital tools should be designed around patients’ needs, not the other way around. To foster trust, these tools must improve people’s experience of care, not create barriers to their confidence and understanding.
Patient-centred design
Involving patients in the design of digital platforms ensures that innovations meet their needs. It’s also an opportunity for patients to test the safeguards of the technologies they’ll be using. Even the best system engineers cannot predict how a person will see or experience a new technology. So patient involvement should be seen as a precondition to development, not as a ‘nice to have.’
Well-designed digital technologies built around patients’ needs can offer a safe, integrated platform and ensure that the data follow the patient. But they must make the patient’s experience of care smoother rather than duplicative, and provide them with clear, relevant and timely information.
[1] Data Saves Lives. Protecting Health Data. https://tinyurl.com/5ajutyzn.
