Ruth Slater
Ruth Slater
Interest Group Lead

On 15 December 2016 the PM Society Patient Engagement Interest Group met at the ABPI offices in Victoria, London to review the activities from 2016 and agree priorities and communications for 2017.

In attendance were Ruth Slater, Interest Group Lead, Becky Galbraith from QuintilesIMS, Kay Fisher from Experience Engineers, Martin Gaul from Nitrogen, Kieran Gormley from Molnlycke, Sarah Ings from Touch Creative, and Deborah Wyatt from TalkHealth .

2016 activity review

The focus for the Working Group for 2016 was to define patient engagement by hearing the views of patients themselves, and to understand current best practice in achieving this engagement through viewpoints from those involved in providing it, and real life programme examples from across the industry.

The group reviewed the outputs from the two key initiatives in 2016:

  1. Insights from the Online Patient Forum held in November, 2016.
  2. Feedback from the patient engagement best practice initiatives.
  1. Online Patient Forum

The objective of the online patient forum was to listen to patients directly in order to gain a less ‘industry-centric’ view of patient engagement and ask them: “What’s in it for you?”.

During the week of 1-5 November  2016, 42 patients enrolled to participate in an online discussion forum, hosted by talkhealth. During the week a webex was held to share more details on how and why commercial healthcare companies engage with patients and the regulatory codes that govern this engagement.

A full report from the forum is provided elsewhere on the PM Society Website. The Patient Engagement Interest Group members particularly noted that patients were reasonably well aware of the types of regulations that govern how the industry interacts with patients. However, this doesn't modify their expectations of the level of engagement that they want from the industry, particularly a desire for open, two-way discussion. One respondent also commented: “I think these [regulations] need to reflect the ever changing world in which we live in”.

Another important indication from this small group of patients was that although Patient Advocacy Groups provide a crucial connection between industry and patients, less than half (60%) of the participants had been in contact with an advocacy group for their condition, and 87% felt that they hadn’t yet seen a patient advocacy group that could fully represent their viewpoints and healthcare experiences. One participant in particular noted: “They always seem to focus on the negativity of a health problem”. 

Future activities: The group agreed that these insights should be taken into consideration when developing the best practice ‘dos’ and ‘don’ts’. The group also agreed that other initiatives to continue listening to patients should be identified for 2017.

  1. Best practice development

The objectives of the best practice initiative are to:

  1. Share success stories and demonstrate new models or facilitators of engagement
  2. Educate stakeholders to increase their confidence with implementing patient programmes (and overcome the ‘fear factor’)
  3. Help key industry stakeholders to build a business case for patient engagement

During 2016 best practice input was gathered from representatives from across the healthcare industry. The survey was particularly targeted at individuals with extensive patient engagement experience and/or a specific patient engagement role, with a focus on quality over quantity.

The group reviewed the input gathered and highlighted:

  • The various definitions of ‘patient engagement’ even amongst this highly experienced group, and the varying motivations that drive this engagement
  • The increasingly multi-faceted approach being taken to patient engagement, with traditional post-prescription support services now being joined by an increasing amount of research, listening and insights gathering
  • The challenges of finding and engaging with a small number of patients that can be representative of an entire patient population
  • The internal hurdles that many people still face when seeking budgetary and regulatory approval for their projects

It was agreed that several very clear and insightful ‘dos’ and ‘don’ts’ are emerging from the best practice initiatives.

The group also extensively debated the question of whether patient programmes are being influenced by the right motivations from ‘top to bottom’ in every company, i.e. the ROI from a patient centric approach is that the only road to success Is by putting your true ‘customer’ – the patient – first. 

Next steps for the group

The group agreed the following key activities for 2017:

  1. To complete the best practice surveys and develop a ‘dos’ and ‘don’ts’ guidance document
  2. To publicise and share the best practice insights and outputs through a co-authored article in the Pharma press
  3. To review of the key challenges and opportunities identified during the best practices initiative and agree a number of priority ‘incubator’ projects for 2017
  4. To hold a PM Society patient engagement ‘event’ in 2017, potentially in partnership with the PM Society Digital Works
  5. Ongoing engagement directly with patients and patient groups keep both perspectives in mind at all times

The next meeting of the Patient Engagement Working Group is planned for April 2017, where we will finalise our ‘dos’ and ‘don’ts’.  If you would like to join us and participate in this or future initiatives, please contact or