UK: Pharma And The Connected Patient: A Patient's View

Last Updated: 10 August 2017
Article by Amen Sanghera

Last month we published our report ' Pharma and the connected patient: How digital technology is enabling patient centricity', which looks at the ways pharma is utilising digital technologies to place the patient at the centre of new business and operating models. To support the report, we commissioned primary research from PatientView, a UK-based research company specialising in obtaining perspectives from patient groups across the world. PatientView surveyed patient groups, on our behalf, on their views regarding the use of health apps, including those produced or developed by pharma companies. A mix of 10 multiple-choice and open-ended questions were asked, to which 190 patient groups, representing 56 therapy areas from 38 countries, responded. This week's blog, by Amen Sanghera, one of our two analysts here at the Centre, takes a deeper look into the findings from the survey.

A patient's view

Patient groups, or patient advocacy groups, are organisations that represent the interests of patients suffering various physical and mental illnesses. Their aim is to help people living with specific health conditions by providing: information on their condition; awareness around screening, prevention and treatment; support for each-other and for families and friends of patients; as well as providing a collective voice that represents the views of the patient group. Linking communication, collaboration and patient-derived insights between patients and pharma is crucial to the long term success of the pharma industry. A primary vehicle for this are health apps, which enable pharma to engage more effectively with patients. Health apps can be used to: improve the understanding patients have of their illness and the therapies prescribed to treat them; improve compliance with treatments and recruitment and retention within clinical trials; and improve health literacy. Our survey aimed to gather the views of a cross section of patient groups, and more specifically, gather patient groups' perspectives on their use of and trust in health apps, their feelings about sharing data and what would incentivise patient groups to share data generated from health apps.

Use of health apps

In order for digitally-enabled patient-centric initiatives to be successful, patients and carers need to be actively engaged in regularly using health apps. Our research indicated that patient group respondents consider that this is indeed the case among the members of their group (see figure 1). According to these respondents:

  • 63 per cent say their members use health apps
  • 55 per cent use these apps regularly or occasionally
  • 65 per cent of patient group respondents believe their members access health apps via their phone, 44 per cent via the web and 28 per cent via wearables.
  • 30 per cent of the respondent patient groups state that the patients with whom they are familiar use at least one health app developed by a pharma company

Figure 1. Patient groups views on health apps used by their members to help manage their condition

Trust

A crucial determinant in the uptake of and utilisation of health apps is the trust people have in the developer or producer of a health app. Indeed, low trust in a developer or producer of an app can result in poor uptake of that organisation's or industry's apps. Patient group representatives surveyed believe that their members' trust apps developed or produced by (figure 2):

  • patient groups, doctors or nurses and universities enjoy the highest levels of trust, with values of 76 per cent, 71 per cent and 63 per cent, respectively
  • biotech companies and pharma were trusted the least, with values of 27 per cent and 32 per cent, respectively. 

Indeed, pharma's low reputational rating amongst patient groups is confirmed in PatientView's own six year longitudinal study into pharma's reputation amongst patient groups. Its latest report, published in March 2017, indicated that those patient groups who stated that the corporate reputation of the pharma industry was 'excellent' or 'good', fell from 45 per cent in 2015 to 38 per cent in 2016.1

Sharing data and incentivisation

Having a user base willing to share data with app developers and producers will enable patient-centric initiatives to thrive. Without a willingness to share data, many of the insights and benefits that can be derived from a patient-centric approach are not attainable. Results from our survey indicated that patient group respondents believe their members: 

  • are most 'willing' to share data with their own specialist/consultant and primary care doctor, (67 per cent and 52 per cent, respectively)
  • are least 'willing' to share data with Governments, health insurance companies and pharma, at 7 per cent; medical device companies and biotech companies at 6 per cent; and the app developer at 4 per cent (figure 2).

When asked about their primary concerns surrounding the sharing of data, patient group representatives commented:

  1. fears about a number of possible negative consequences of sharing the data (I.E loss of insurance or the misuse of data)
  2. lack of trust in the data gatherers
  3. the need to protect personal privacy
  4. concerns over lack of any proper security needed to safeguard the personal data.

Figure 2. Patient groups views on their members trust in health apps (top) and willingness to share data with pharma and other groups (bottom)

Moreover, when patient group representatives were asked to select from a range of incentives that might increase willingness of their members to share data, the results indicated:

  • 57 per cent believe that guarantees that the data would not be sold or passed onto third parties would increase willingness, and 56 per cent say the same regarding guarantees of anonymity
  • 26 per cent believe that non-payment incentives, such as free gym memberships, would increase willingness, while 16 per cent believe the same about financial incentives.

Patient groups on pharma apps

When patient group representatives were asked specifically about pharma apps, they believe that:

  • 25 per cent of the members whom they are familiar, are unaware whether a health app is made by pharma, because the identity of the developer is obscure
  • members would find pharma applications 'very useful'  or 'quite useful' if they provide information on the patient groups that can provide support to patients (76 per cent), information about their treatment (75 per cent), information about their condition (73 per cent) and how to access treatment  (73 per cent)
  • only 15 per cent of the patient groups we surveyed have been involved with a pharma company in co-creating a health app, despite a willingness to do so.

Conclusion

Viewed  collectively, our data paints a picture of a modern day patient who:

  • is a regular user of health apps across multiple different devices
  • is highly trusting of apps produced by their patient group peers and is willing to share data with healthcare teams co-ordinating their care
  • is distrusting of apps produced by, and is not very willing to share data with, large corporations, whether they are tech companies or life science companies
  • is not incentivised by monetary gains to share data but prioritises transparency over the use of and anonymity of their data
  • wants the producer of the apps to be transparent in its dealings and collaborative in its app development, especially with apps developed by pharma.

These attributes provide insights that companies can utilise to inform their app development strategies and address the concerns of patients. Indeed, if pharma is able to demonstrate clearly that these requirements are met, then patient-centricity will have a chance of gaining traction. However, if their needs remain unmet, then patient adoption of health apps, in particular those created by pharma, will remain low.

As our report shows, many pharma companies are actively working to address these issues, and some have successfully used health apps to engage more effectively with patients. In these cases the patient and clinicians are fully involved at all stages in the development of the app, and their concerns about trust and data sharing are addressed from the outset. As we move forward and company strategies and patient profiles evolve to foster more meaningful collaboration, we will expect to see more cases of digital innovation. These cases will be fuelled by the ubiquity of technology and the proliferation of health apps, which will in turn begin alleviating issues that have detracted patients form engaging with apps produced or developed by pharma.

Footnote

1 http://createsend.com/t/j-F9E5E5647E345B15

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