Sharing Personal Health Data: The Patient’s Opinion

In a survey of 2,000 patients suffering from chronic medical conditions (such as diabetes, cancer, asthma, COPD and arthritis) less than 4% of respondents were happy to share their personal health data with consumer companies such as Nike, Apple or Facebook. However, 72% were happy to share their data with doctors other than their own and 47% were happy to share data with fellow patients.

As patients are encouraged to use technology in order to manage and monitor their healthcare this lack of trust exposes some real challenges that must be overcome by the industry if the full range of benefits offered by ‘big data’ are going to be realised. Consumer brands such as Apple, which recently launched their Health app, want to enter the ‘mHealth’ space, however this significant lack of trust among patients when it comes to data sharing may prohibit take up.

• 2.2% of patients said that they would be happy to share their health data with Apple
• 3.5% said that they would be happy to share their health data with Facebook
• 2% said that they would be happy to share health data with Nike
• 26.3% of patients would be happy to share their personal health data with pharmaceutical companies
• 17.7% of patients would not share their data with any of the options presented

The survey, commissioned by Team Consulting – a medical device consultancy, highlights the willingness from patients to exchange important data with the wider healthcare profession and other patients, which is good news for healthcare providers such as the UK’s NHS that recently published its action plan to make better use of patient data and technology. The information that could be captured and shared would help shape healthcare services and inform future drug or device developments.

The responsibility now falls on pharmaceutical companies and consumer brands that offer patients the opportunity to capture this data to prove that they can be trusted with patient data beyond just logging basic exercise and diet information. Technology could play a really important role in helping patients to adhere to medication, but the survey reveals a significant barrier that needs to be overcome.

Dan Flicos, CEO at Team Consulting said: “The patients and doctors that took part in our survey expect radical change in healthcare systems over the next 15 years. Many expect to be more involved and to take more responsibility for their health and a key component of this is the sharing of data between patients and their doctors. As a result, this lack of trust in the consumer brands is a major roadblock and one that must be tackled through greater transparency.”

Flicos adds: “As data and technology start to play an increasingly important role in healthcare we need to have a better grasp of what barriers to adoption exist. The technology exists but not yet the trust.”

The wider results of the survey, which look at a range of issues such as patient trust, involvement, confidence and concerns are published in a report titled “Patient and doctor perspectives.”