What does being patient-centric really - truly - mean?

Written by Sonja Rnic, Ed Senior & Richard Jones on Wednesday 19th June 2019

Ed Senior and Richard Jones from OPEN Health Patient & Brand Communications went to the Patient Centricity & Engagement Conference in May 2019. Their aim was to understand the appetite from a range of pharma companies for truly engaging patients and learn about innovative and successful examples.

The Patient Centricity & Engagement Conference looks at ways to deliver advanced insights into the most effective ways to engage patients, and drive better patient and business outcomes. It was attended this year by patient leads, communications leads and clinical trial leads from the UK, regional and global pharma, and UK patient advocacy groups.

Here Ed and Richard share their thoughts on the event and what they learned from the panel of senior speakers from across the pharma industry, on how pharma can really become more patient centric.

What does being Patient Centric or Patient Centricity actually mean?

Through discussion, a clear working definition of patient centricity has been put forward. In essence, patient centricity can be defined as,

“Putting the patient first in an open and sustained engagement of the patient, to respectfully and compassionately achieve the best experience and outcome for that person and their family.”

Pharma wants to be patient centric but needs to go further

Understanding patients requires an understanding of patients’ emotional needs. In a UCB-sponsored study published in The New England Journal of Medicine, patients were asked what their unmet needs were across a range of chronic diseases. 6 out of 8 unmet needs were emotional - only 2 were medical. Artificial intelligence was used to gather patient insights in this study and the use of digital tools is encouraged.

Pharma could go a long way further than it does now in engaging with patients on the clinical journey, treating patients as experts and active agents in their own health. This might include:

  • Decision-making - involvement in clinical trial design, agreeing the best way to communicate treatment side effects
  • Respect - clearly communicating essential information such as consent forms in plain language. Giving patients their trial results before they are presented or published
  • Promoting understanding – creating lay summaries of trials (due to become EU legislation in 2020), helping patients to navigate complex health systems

Pharma and advocacy need to work together for patients

Research shows that advocacy groups provide a great service in pushing for better treatment options and supporting patients with health conditions. Advocacy can also help patients further by:

  • helping people better understand treatment side-effects and what to do about them
  • educating patients on the course of different diseases
  • connecting people to others so they can share their experiences

Pharma companies and patient advocacy groups (PAGs) can help each other

Cancer Research appreciate that the relationship between advocacy and pharma needs to develop and are planning a strategy to engage more and appropriately with pharma. Advocacy groups can communicate with patients about clinical trials, help to identify the hard-to-find patient cohorts and provide valuable insights at any stage of the clinical journey.

One leading pharma company ran a survey with PAGs and acted on the results by producing guidance on the contracting process, running workshops on the health technology assessment process and social media campaigns, and creating a patient charter to annually check their progress and standards.

The Big Patient Centricity Idea

Richard Jones summed up the day with a single proposition:

Challenge yourself as a pharma company or an agency supporting pharma – or how do you know that what you are doing is truly patient centric?

The Patient Centricity & Engagement Conference was held on 21st May 2019 and is organised by Global Insight Conferences. Speaker presentations are available from £199.


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