Ruth Slater
Ruth Slater
Interest Group Lead

On 25 April 2017, the PM Society Patient Engagement Interest Group met at the ABPI offices in Victoria, London. The aim of the meeting was to agree the patient engagement best practice Dos and Don’ts guidance document, and to discuss further best practice initiatives and pipeline incubator projects to prioritise for 2017.

In attendance were Ruth Slater, Interest Group Lead, Becky Galbraith from QuintilesIMS, Kathryn Bailey from Healthcare at Home, Sarah Ings from Touch Creative, Stephen O Farrell from Aurora, Caroline Benson from Cuttsy and Cuttsy and Natalie Turner from Axon.

At the beginning of the meeting we reminded ourselves of the objectives of the best practice initiatives:

  1. To share success stories and demonstrate new models or facilitators of patient engagement
  2. To educate stakeholders (and overcome the ‘fear factor’) so that we can increase their confidence with implementing patient programmes
  3. To help industry stakeholders to build a business case for patient engagement and help patient groups to collaborate with the industry

Best Practice – Dos and Don’ts Guidance

During 2016 the Patient Engagement Working Group gathered best practice opinion from across the industry via a targeted survey of representatives with extensive experience of working on patient-focussed projects. The results were reviewed and common themes identified, drawing out simple but effective best practice guidance in the form of a collated list of Dos and Don’ts.

In the meeting, we reviewed and agreed the final Dos and Don’ts, calling on the extensive insights and experience of the Interest Group attendees. The group agreed that the finished guidance should:

  • Focus on encouraging a culture of co-creation, where the different stakeholders from the industry and those representing the patient and healthcare providers all work together as soon as possible.
  • Cover both projects that gather patients insights and patient support / activation type projects. Demonstrating the fundamental need for activation and support projects to be informed by effective insight gathering, and the importance of closing the loop through follow up and feedback with all the participants, no matter how small the project.
  • Recognise that commercial and patient-focussed motivations need not compete, as long as there is transparency and shared objectives / outcomes setting from the start.
  • Encompass a clear set of things to actively do and pitfalls to avoid – but not duplicate the advice offered.

After an in-depth discussion, a list of 11 Dos and 11 Don’ts were agreed and finalised. It was agreed that it would be valuable to gain final ratification of this list by testing them with a small number of people from pharmaceutical companies, before launching them on the PM Society website.

Broadening the awareness of the Dos and Don'ts

It was agreed that the group should author an opinion article around the Dos and Don’ts to begin to share this more broadly across the industry. This article would include:

  1. An Introduction to Patient Engagement; Including key questions to ask yourself to ensure you are truly patient-focussed before you begin. The topics covered would focus on how to get it right at the start, including insights gathering, co-creation and identifying patient-orientated ROI.
  2. An overview of today’s best practice and ways to overcome key barriers, including a look at what more we can do to effectively work within industry regulations, data protection and patient confidentiality.
  3. A look into the opportunities of the future; identifying mutual interests between patients, industry and PAGs to enhance engagement and collaboration. This would touch on the importance of closing the loop and follow-up / feedback with all participants.

The Interest Group will be working in three authorship groups to develop this article over the next few months.

Future priorities for 2017

1. Digital Works

It has been agreed that the next Digital Works meeting (to be held in September/October) will showcase digital initiatives that put the patient first and had a true impact on patients’ lives. Although it will be nice to demonstrate innovation the most important priority will be to show how the digital project made a true difference to the patients it was created for.

The Interest Group will help to organise, recruit and manage this event in 2017. If you would like to propose a project to be showcased we would be delighted to hear from you.

2. Incubator Projects

The group reviewed the key challenges and opportunities identified to date and agreed to work on a number of priority incubator projects for 2017. The objective would be to create a series of ‘How to Guides’ to provide detailed practical advice on how to overcome these challenges, which has been co-created with key stakeholders across the industry. These guides would be created following a workshop/debate style session with key stakeholders most relevant to each challenge.

The Interest Group will now agree on the top priorities and develop a number of incubator projects going forward.

3. Broadening industry participation in the interest group meetings and activities

The group all agreed that it would be beneficial to gain broader industry representation at future meetings. The barriers to industry participation were discussed and it was agreed that we should explore different solutions for gaining greater participation in the future, particularly on the incubator projects.

If you would like to be involved in these activities or know of a colleague or client that you think might be interested, please do let us know.

Next steps for the group

The group agreed the following next steps and priority activities:

  1. To finalise the Dos and Don’ts guidance document by sharing with industry contacts for ratification.
  2. To establish authorship groups for the Patient Engagement Opinion Article.
  3. To identify projects to be showcased at the PM Society Digital Works meeting in September.
  4. To agree and plan the priority incubator projects.
  5. To ensure ongoing engagement directly with patients and patient groups, so that we are keeping each perspective in mind at all times.
  6. To plan for ways to encourage further industry representation within the group and create a ‘safe place’ to share best practice examples and opinion.

The next meeting of the Patient Engagement Working Group is planned for July 2017. If you would like to join us and participate in this or future initiatives, please contact or