A guide for best practice in patient engagement

  • A PM Society survey revealed that 100% of respondents felt that there was more pharma could be doing to engage with patients, with 89% believing this approach was extremely important.
  • Engaging with patients can provide valuable learnings that can help shape strategy, but we need to put in place a framework that involves them at every stage; from R&D to patient support programmes.
  • To achieve a genuinely patient-centric approach, steps must be taken to create a company culture that truly values patients’ insights and views.
There are lots of practical ways for pharma to engage with patients, which can make a positive difference to patients and build the commercial success of a medicine. Caroline Benson, Co-Chair of the PM Society’s Patient Engagement Interest Group (PEIG) and Co-Founder of Cuttsy+Cuttsy, outlines the actions to take in this best practice 10-step guide.

The PM Society’s patient engagement survey found that 100% of the respondents felt that there was more pharma could be doing to engage with patients, with 89% believing this approach was extremely important.

PM society inforgraphic

These insights highlight the huge challenge with patient engagement. Although there is obviously great belief in this approach, the difficulty still lies in applying it and getting the buy-in from stakeholders.

The following 10 tips for patient engagement have been developed as a result of the insights and learnings from various perspectives within the industry:

1. Listen

There is a common assumption within the pharma industry that they and healthcare professionals (HCPs) know what is best for patients. However, by actively listening to patients’ experiences and their wants and needs, valuable insights can be uncovered. These learnings can then be transformed into practical solutions to enhance the patient experience and help shape strategy.

“We have two ears and one mouth for a reason. We need to learn to listen first and talk second.”

Mark Duman, Patient and NW Service Champion, Diabetes UK

2. Support patients to become empowered

Engage patients to take a closer look at their own condition.

Case study:
A partnership between Deborah Wyatt of talkhealth and Toby Cobbledick of Mölnlycke Health Care found that having parents’ support to self-manage was key to improvements in the child’s eczema.

The project began with recruitment from the talkhealth community. The parents of children with eczema in the sample were surveyed throughout a 12-month tracker programme on areas such as severity of the condition, how the child was feeling, key events (such as extreme weather or going back to school) and how often they had been to see the GP. Crucially, they were also asked to record the daily condition, triggers and treatment given on an ‘Eczema Tracker’.

Parents felt the condition had improved through closer engagement with the daily changes and treatments. Numbers of visits to the GP also dropped, resulting in savings for the NHS.

3. Talk the talk

Identify appropriate language by listening to the way patients describe and discuss their disease and treatment. Use this same language to communicate with them.

4. Stakeholder engagement

Arguably, the most challenging step in achieving a patient-centric approach is creating a company culture that values patients’ insights and views. This may mean challenging current stakeholder views that listening to patients is ‘soft and fluffy’ and without a business benefit.

Generating internal buy-in can be achieved by sharing patient engagement best practice, with results and impact, within your organisation. Using a framework to guide activity will also help structure change. Ensuring all of the senior leadership team are aligned in their views and that there is a senior advocate within the business is also vital to creating a cultural shift.

5. Take a fresh look at ROI

The insights gained from engaging with patients can lead to surprising and unexpected conclusions. It can be highly valuable for the business as a whole and will help bring added value to your work and that of others too.

Guy Yeoman, Founder of MediPaCe and previously VP of Patient Centricity, Global Medical Affairs at AstraZeneca, highlighted the long-term financial value of patient engagement as well as the significant health value to patients, when he spoke at the PM Society’s first Patient Engagement event earlier this year. He outlined one obvious benefit of patient engagement – better adherence to treatment. This not only benefits the patient, who gets the results they deserve, but also benefits pharma through product sales. This financial upside can outweigh the costs of investing in a patient-engagement approach.

6. Complete the engagement cycle

The PM Society report highlighted that there is a real need to engage patients not only in commercial and patient-support programmes, but also in research and development, clinical trial design and market access communications. [read the full report here]

Reinforcing this end-to-end involvement, Yeoman emphasised the importance of not stopping after gathering initial patient insights. He explained that patients must then be involved to co-create solutions and that impact must also be measured to complete the patient engagement loop. He calls this the ‘3i model of patient engagement’.

7. Take a positive approach to compliance

Rather than focusing on regulatory compliance hurdles and restrictions, focus on what can be done to engage with patients. Speaking at the same meeting, Jayne Packham, of Jayne Packham Consultancy, highlighted that the ABPI appreciates that pharma can work with patient groups, so it is definitely not something to be avoided.

Jayne acknowledged that there is little about disease awareness campaigns in the ABPI’s Code, so it is also worthwhile reviewing the MHRA blue guide which summarises legislation on what can and can’t be done in promotion.

Additionally, she recommended that pharma companies and their agencies must ensure that any disease awareness campaigns include a clear declaration of sponsorship, and declaration both ways in a two-way sponsorship. She also reiterated the importance of publishing Zinc code certification.

8. Collaborate

Collaborations can offer real value when it comes to gathering useful insights and enabling pharma to better support patients. For example, partnering with patient organisations that hold a shared vision is a powerful way for pharma to engage with patients and make a real impact.

Case study:
Audrey Leichti, of Takeda UK, and Andy McGuinness, of Crohn’s and Colitis UK, found patient insight highlighted a wider problem for patients with inflammatory bowel disease (IBD). Their successful partnership has had significant and measurable impacts for all involved.

Their research found that for people with IBD, toilet facilities were a major source of worry and anxiety when travelling. A total of 70% of those surveyed worried about toilet facilities whilst travelling and 28% had deferred, changed or cancelled a trip abroad because of IBD-related issues [read the full study here]. As a result of the study, practical, actionable steps were taken to campaign, gather support and put in place signage that made disabled toilets ‘accessible’.

This example highlights why pharma should be open to collaborations involving charities, patient advocacy groups, HCPs, other pharma companies and, of course, patients.

9. Be transparent

Always be transparent about why you want to engage and for what purpose. Also, keep patients updated on progress and developments, managing their expectations in a sensitive manner along the way.

Opening up a two-way communication channel and providing a named contact can be valuable in building trusted relationships between pharma companies and/or their agencies and patients. These relationships must not be considered as a short-term business interaction but built step by step and sustained for the duration of the project to stop patients feeling abandoned or exploited.

10. Build flexibility for change

For true patient engagement, it is essential to have the flexibility to change based on what patients tell us and what their genuine needs are. Listening to insights may impact the initial objectives set and so it is important to be prepared for changes in the scope of projects.

Mölnlycke Health Care’s willingness to be flexible allowed them to use monthly reports supplied by talkhealth to feed into their brand plans.

Yeoman summed up neatly: pharma needs to deliver experiences and outcomes that patients actually want.


So, there is huge opportunity for pharma from putting patient engagement at the centre of its strategies. Driving this change forward requires a supportive framework that will allow pharma to take bolder steps into patient engagement. Working in partnership with patients and patient organisations will ensure a positive reception from all involved, and mutually beneficial outcomes down the line.

About the Author

Caroline Benson is Co-Founder and Director at Cuttsy and Cuttsy, and co-chair of the PM Society Patient Engagement Interest Group.

Having worked as a care assistant during her university years and while studying for a PhD, Caroline realised how important conversations with patients were and that all most of them wanted was to have their voices heard.

Caroline started her career in healthcare communications as a project manager, working her way up to Head of Client Strategy. She founded Cuttsy and Cuttsy with her brother Mathew, seven years ago with a purpose that still holds true today: people matter.

The agency uses emotional intelligence in its work with patients, HCPs and carers to identify and co-create materials to make the experience from diagnosis to treatment easier for others going through the same journey, in language they can understand.

Don’t miss your complimentary subscription to Deep Dive and our newsletter

Sign up



Your name

Your e-mail

Name receiver

E-mail address receiver

Your message