Patients are people: why we need their voices in healthcare comms

Listening and acting on people’s real, lived experiences of a medical condition are vital components of healthcare communications. Hear from our team on why the patient “voice” helps shape our work, and how agencies can bring together industry, health professionals and people living with conditions, to create campaigns with far-reaching impact.

1. Why is it important to involve patients and what are the key benefits?

HW:
To truly understand the mindset, behaviours and needs of any audience, it’s essential to get under the skin of their lived experience. If healthcare companies are serious about putting patients at the heart of their practices then engaging directly with those who have been diagnosed with a particular condition, and their loved ones/caregivers, is critical – after all, they are the end users of pharmaceutical products.

Co-creating with patients, we can be confident that our communications will resonate with the intended audience and be sensitive to the nuances of particular groups, for example, in a recent patient advisory board meeting with a group of patients aged 60+, it became apparent that this age demographic don’t like to see stereotypical visuals of grey-haired, wrinkled, retired people as they do not resonate, -, it’s human nature to believe that you look younger than you are! This type of insight can be pivotal to the success, or downfall of a campaign.

More and more, our disease awareness work is online, and an emerging area of our work is building social media communities with the support of influencers. Partnering with patients online can help us engage with our audience in a trusted and authentic way, and influence conversations at a time when so many people are seeking health information and support online.

NM:
By understanding what matters to patients, we are able to communicate the benefits the brands we work on clearly to HCPs. We are able to bring the patient voice to the narrative to make it more relevant to HCPs’ day-to-day practice. We have worked with patients not only to gain insight about living with a condition, but also with artists who can help us co-create campaign visuals and create immersive gallery experiences that depict their lived experience.

CK:
When it comes to medical affairs, we also talk about personalised care and how to improve the patient-physician dialogue to aid diagnosis and optimal treatment solutions. In order to ensure optimal care, patients need to feel comfortable and able to speak openly and clearly with their healthcare team members. We work with patients and patient support groups to gain insight into what is it really like living with a condition, thereby aiding the development of our communications.

It is important to empower people so that they can be part of decisions and encourage personalised care. Creating tools for HCPs that can facilitate discussions around symptoms to assist diagnosis, reporting of side-effects, lifestyle details and highlighting issues with adherence, can be a vital part of effective consultations.

2. Are there times when it is not appropriate to involve patients?

CK:
As much as patients can help us develop content, we also work at lot with health professionals to help them develop their patient consultation skills. For these sorts of programmes, we use people to play the role of patients rather than people living with the condition themselves.

NM:
There are always challenges in a highly regulated industry, especially when promoting medicines. For example, we have recently been working on a product for a rare disease with a very specific indication; there are different regulations across markets, therefore on some occasions we have to use hypothetical patients instead, in order to ensure accuracy and compliance.

HW:
Working in a regulated industry, it is important to ensure that patients are involved for the right reasons – intent is key. Provided your reasons are to understand their experiences, needs and viewpoints, then on the whole I see no reason not to engage with patients. The way in which you carry out the engagement and being transparent about the company and objectives behind it is what’s important.

3. How do you identify the most appropriate patients or patient groups?

HW:
Often our clients will have established relationships with Patient Association Groups, and this
can be an easy and trusted route to accessing patient insights. However, if a client is new to a therapy area, sometimes we will start with a landscape audit to identify active PAGs/patient forums/individuals and then we will agree the approach with our clients. Landscape audits are also crucial to find social media ambassadors who can help communicate our campaign. A patient advisory board meeting whereby patients are recruited either via PAGs, or through HCPs, is often a good place to start when it comes to consulting with patients around a specific topic.
It is important to recognise that the patients that are involved with PAGs may be more active and engaged than your average patient, and therefore, it can be beneficial to also engage more ‘typical’ patients by reaching out through HCPs too.

4. How do you continue to involve patients in the longer term?

CK:
After we work with patients to gain their insights during the development of a programme, we may work with them on specific tactics such as patient videos and testimonials, testing tactics, or attending meetings to bring the patient perspectives to life. I and clients have often found real patient stories very emotive, bringing to life what a disease means in reality rather than theory.

HW:
Sometimes (usually following on from an advisory board meeting), we will establish patient ‘ambassadors’. These people act as advisors in relation to our campaigns. We will consult them throughout – from concepting, through to finalisation of assets, to help ensure that content is fit for purpose and that relationships are maintained. This enables our clients to build strong relationships with patients, that will often last beyond the lifespan of a particular campaign.

We also often run disease awareness campaigns in collaboration with PAGs, which means that we co-create initiatives with PAG representatives, and they review and approve all assets prior to release. This ensures a long-term partnership approach, and we also encourage our clients to consider the potential to handover campaigns and assets to PAG partners in the long-term.

5. What is the biggest learning around patient involvement, in your experience?

CK:
The only ‘mismatch’ that I have ever encountered is the lack of appreciation of possible logistical or mobility issues and stamina, with regards to attending live meetings. We have managed this on some occasions by video recording the ‘presentation’ and then bringing in the patient online for a live Q&A.

HW:
Being mindful of patients’ physical limitations in terms of attending events or meetings, is important. Often patients with certain conditions can tire easily and therefore being thoughtful about adequate breaks in the agenda is key. Also, ensuring that everyone has a ‘voice’ and an opportunity to be heard is important, as sometimes more outgoing personalities can dominate a meeting, so as a facilitator, it’s good to be mindful of this and try to enable all parties to be heard.

It’s crucial that relationships are maintained and that patients / PAGs feel like they are part of the journey of a campaign/project and not that they are disposable entities, so ensuring regular touchpoints and input from conception to completion of a project is key to this.

6. What would you say to others working in healthcare comms?

HW:
Most importantly, we have to remember that patients are people. They don’t think of themselves as ‘patients’, even though that is the way HCPs and often pharma companies speak about them. I’ve lost count of the number of times that people have said this during advisory board meetings – “we’re people not patients and we are not defined by our disease”. I think this is very important for healthcare communicators to remember and to instil this awareness in our clients. For example, removing all mentions of “patients” from slide presentations that are being given at patient events and instead refer to them as “people living with x condition”, can make a big difference. Nobody likes to feel like a commodity.

NM:
At some point we have all been a patient or have family and friends who have been patients. By reflecting on what that has meant for us personally, can increase our empathy and awareness.  Just taking a few minutes to remember our own experiences will help keep patients front of mind, and in turn, help us produce more patient-centric campaigns.

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