December 6, 2017

Deloitte – Patients Reasons to Share Data

PATIENT VIEW RESEARCH IDENTIFIES PATIENTS’ REASONS TO SHARE DATA – Deloitte

Research by PatientView with 190 patient groups worldwide for Deloitte found that patients would be “willing” or “somewhat willing” to share their personal health data from apps if it is guaranteed that:

Firstly, the data will benefit other patients with similar health conditions.
Secondly, their data will be anonymised
And lastly, their data will not be sold, or passed on to third parties.

Top barriers to sharing data

Research by PatientView as part of Deloitte’s report ‘Pharma and the connected patient’ identified the barriers that make patients most reluctant to share their data in apps.

The top barriers were:

Fears about negative consequences of sharing the data, including misuse of data and loss of insurance
Lack of trust in the data gatherers
The need to protect personal privacy
Lack of any proper security needed to safeguard the personal data.

What would encourage patients to share data?

For many years, PatientView has identified polarised views from patient groups in different therapy areas about sharing data. A great deal depends on the scale of the unmet clinical need facing the patients. For example, in general, patient groups tend to be most willing to share where the need for clinical research is most pressing, for example rare diseases and HIV.

In the research for Deloitte, PatientView identified what 190 patient groups worldwide felt would “persuade” patients to share their data more readily through health apps.

The strongest incentives related to transparency around why the data was being collected, how it would be used, who it would be shared with, and how secure it is.

Purpose:

49% would find it persuasive when “data to benefit other patients with a similar condition.”
57% when “data not sold, or passed on to third parties”
47% when there is “information about what data is going to be used for”.

Privacy and security:

56% would find it persuasive when there are “guarantees of anonymity”
47% when there is “use of high quality encryption to avoid hacking.”

Who do they trust most?

The PatientView research showed that patients are most willing to share their data from health apps with their own doctors. They are most reluctant to share with developers, pharma and health insurance companies:

More than 80% would be willing or somewhat willing to share their data with their own specialist/consultant or primary care doctor
73% would be willing or somewhat willing to share with patient groups
Less than 30% would be willing or somewhat willing to share with app developers or pharmaceutical companies
Only 24% would be willing or somewhat willing to share data with a health insurance company.

Reality check…

To address patient needs for `guarantees’ around transparency of purpose and security, health app development practice would need to improve quite radically.

From the earliest days of health app development, we have constantly reported patient group issues with the lack of clarity of terms and conditions, privacy violations, and business models that rely on selling data with little or no patient awareness or control of their health data.

The PatientView research for Deloitte shows some hope. In the early years, a big concern was whether patients even knew their data and privacy were at risk. Now at least it seems, that perception of risk is much higher, and if this makes patients more cautious about which apps they use, that has to be a good thing.

However, using a health app is still a leap of faith. It depends on the trust the user has in the developers and funders. Sometimes, with many stakeholders involved in developing an app, users have to hold that faith with a range of bodies.

For example, part of the UK National Health Service recently developed an excellent health record app.

As a potential user, it passed two key hurdles:

It was available from through the National Health Service, which still has high levels of patient trust and satisfaction.
It was from an app developer with a strong track record in ehealth and patient usability.

Where it fell down was that it was based on a leading software company’s development platform, which imposed terms and conditions phrased in dense legal jargon, and beyond the control of the NHS or the app developer. It appeared to give the software company full flexibility over my data, and disempower me as a patient. Faustian pacts have no place in healthcare, but there’s still little sign that the long-standing transparency issue will be addressed.

If the latest PatientView research shows that around half of patients are potentially open-minded about sharing data in apps, it’s now down to the industry to put in place the guarantees and transparency required.

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