Blogs

Capturing the patient voice through film

Rebecca Lawes

This World Asthma Day, MHP Health explore what effective patient centricity looks like and what more might be done by the pharmaceutical industry.

The patient voice is the loudest it’s ever been.  In the networked age, patients in every disease area can be informed, engaged, and vocal about their condition.  There is a reason the health care industry sometimes approaches social media with caution.

Campaigns driven by misinformation, such as the anti-vaccination movement, galvanise their support base and spread fake news over platforms like Facebook to great effect.  However, patients have also harnessed social media to become masters of their own experience and partners in their health care decisions, by engaging with others in a similar position and sharing research related to their conditions.

Social media offers the healthcare industry an opportunity to articulate, engage with and showcase the patient voice to a degree that was not previously possible.  This change gives the space and opportunity for bolder, more ambitious disease awareness campaigns that are rid of dry, corporate messages but rather effectively capture the individual, varied and frank perspectives of the patients the industry serves.

World Asthma Day

This World Asthma Day, we look to how companies are engaging with patients to tell their stories in new ways.  One way MHP has done this is through a new project the team have been involved in which explores the global unmet need in severe asthma through personal stories and creative filmmaking.

Severe asthma is a dangerous, life limiting disease[1], distinct from mild and moderate asthma where patients have daily symptoms that cannot be controlled by standard treatments and can limit daily activities[2].  It is often misunderstood as being comparable to the milder cases of asthma we see our friends and family with, leading to underdiagnosis and poor treatments.  Telling the stories of patients suffering from the disease is therefore incredibly important.

Beyond severe asthma, what can we learn about capturing the patient perspective through film?

  • Be bold in the face of challenge: Filming real people with complex care needs is not easy and this ought to be factored in to planning any kind of patient centred campaign
  • Individual voices are crucial and can be overshadowed by a focus on patient groups: Patient perspective is about the community as a whole and individuals.  The latter can be overlooked because it’s so much harder to capture them effectively than inviting a large national patient group to a meeting…
  • There is a danger that we can start ‘talking to ourselves’: Patient centred disease awareness should reach beyond the community that’s already advocating for that change – only interacting with the already-engaged members of any community will impose a limit on how far a message can travel
  • We need to be pragmatic in our work: The patients we need to learn from, understand and give a platform to are, naturally, incredibly unwell. Increasing timelines, having alternative plans for shots and being as flexible as compliance will allow to ensure that the stories that we tell are authentic

The jump between distilling patient stories such as those we examined here and turning them into tangible public policy changes is a large one – the industry is by no means there yet. Voicing perspectives, anecdotes and heart-breaking realities of diseases does not mobilise policy change alone.  However, by listening to the voices outside of the big advocacy groups and being holistic in our understanding of the patient perspective, we can create bold and impactful campaigns that help give a far louder voice to real patients.  From there, the steps toward real world change can be made.

[1] Menzies Gow, Andrew.  A Charter to Improve Patient Care in Severe Asthmahttps://link.springer.com/article/10.1007/s12325-018-0777-y September 2018.  [Accessed May 2019]

[2] Asthma UK, What is Severe Asthma? https://www.asthma.org.uk/advice/severe-asthma/what-is-severe-asthma/. [Accessed May 2019]