Ruth Slater
Ruth Slater
Interest Group Lead

On 29 September 2015 the PM Society Patient Engagement Interest Group held a virtual webex meeting with representatives from across the healthcare industry to share their perspectives on the current opportunities and challenges to achieving better engagement between patients and the commercial healthcare industry.

The discussion was led by Ruth Slater, the Interest Group Lead, and in attendance were Becky Galbraith from Quintiles, Kay Fisher from Experience Engineers, Emma Kenny from Axon Communications, Martin Gaul from Nitrogen, Phil Wright from Daiichi Sankyo UK, Deborah Wyatt from TalkHealth, and Sally Snow, from Amgen.

The Meeting Objectives were to:

  • Share perspectives on the opportunities and challenges to achieving better engagement between patients and the Pharma/Biotech industry
  • Identify potential immediate objectives for the working group
  • Prioritise specific issues and topics to be explored in greater detail during future working group activities in 2016

What is the current status of engagement between industry and patients in the UK?

The group agreed that there is a great deal of variation in patient engagement across the industry. Some companies seem to be engaging deeply with patients on both a population and 1-to-1 level; however other companies still seem to be keeping their distance. However, There is clearly increasing recognition of the importance of patient engagement, evident in the creation of new ‘patient-specific’ job roles and patient focussed departments and initiatives.

Several challenges to achieving effective collaboration and engagement between the industry and patients were identified…

Particular challenges identified in the discussion included:

  • Lack of confidence or experience among Pharma representative in engaging with patients in a compliance with industry codes, leading to a strong ‘fear factor’
  • Investment challenges as patient engagement programmes can be costly and it is hard to track a clear ‘ROI’
  • Lack of awareness or belief amongst patient groups of the benefits of ‘working with’ Pharma
  • The nature of patient engagement varies depending on the disease and its stage. No ‘one-size-fits-all’ solutions
  • A general concern that we may only be paying ‘lip service’ to the insights collected through patient research, and more skilful reading and application of these insights is required

Future priorities for the Patient Engagement Interest Group

Based on the discussions the following key priorities were agreed for the group in 2016:

  1. Listen to patients directly to gain a less ‘industry-centric’ view and keep the patient perspective constantly in mind; always asking “What’s in it for them?”
  2. Share success stories and demonstrate new models or facilitators of engagement
  3. Educate pharmaceutical/biotech stakeholders to increase their confidence with implementing patient programmes (and overcome the ‘fear factor’)
  4. Help key industry stakeholders to understand how to build a business case for patient engagement
  5. Help key patient representative and stakeholders to understand how to put forward projects to industry
  6. Build a network of stakeholders to identify key barriers to effective patient engagement and take an incubator approach to identifying ways to address them
  7. Ensure that all activities are additive to what other organisations are offering (e.g. ABPI, AMRC)

Next steps for the group

It was agreed that key representatives of the group would focus on three key initiatives in 2016:

  1. Develop a best practice survey to share with key industry experts and share insights and knowledge of how to achieve the best in patient engagement
  2. Share examples of best practice in patient engagement to demonstrate value and help overcome the fear
  3. Engage directly with patients and patient groups to hear from them what they think and expect from the pharma industry

See the report slides for a more detailed summary of the meeting.

If you would like to get involved in this PM Society Interest Group or have any perspectives that you would like to share with us, please contact or