Listen to their stories. For biopharma companies aiming to connect with patients and caregivers, therein lies the secret to meaningful engagement.

This was the takeaway from a special live episode of thecompanys Living With podcast, inwhich Health Unions community strategist and storyteller Emily Downward andCOO Lauren Lawhon, together with Alisha Bridges, a psoriasis patient advocateand one of Health Unions 300-plus contributors, discussed how important it isfor pharma marketers to understand what its like to live with a chroniccondition.

Downward, who moderated the discussion that took place atthe Digital Pharma East conference in September, said that patient data is ofmost value when integrated with daily social interaction. She added thatinvolving the consumer in treatment decisions and taking the time to see howchronic conditions impact a persons daily life allows pharmaceutical companiesto create meaningful engagement at all points in the patient journey.

Bridges, who has been living with plaque psoriasis for thepast 25 years and has written numerous blogs and articles forplaquepsoriasis.com and psoriatic-arthritis.com, said that her involvement inchronic illness advocacy has allowed her to play an active role in her ownpatient journey.

My doctor considers me kind of a super patient, sheshared. Because Im so involved in psoriasis research, Im sometimes the firstto know about the latest treatments and whats coming down the pipeline, andbetween my research and then hearing the experiences of others in thecommunity, Im able to bring that information with me to my doctor.

Lawhon said Health Union has identified a surge in thenumber of patients who are more proactive in making treatment decisions,whether by educating themselves through online resources or because theyretaking the time to discuss options with their families, their doctors or otherpatients.

We did a meta-analysis of the 32,000 respondents from ourIn America patient surveys last year, across all our conditions, shereported. More than two-thirds said they play an active role in theirtreatment decisions, with almost half of them going online to seek informationand read about other patients experiences.

Most of the people visiting Health Unions onlinecommunities are looking for emotional support or solidarity, Lawhon stated, orfor a way to validate their experience. Often in pharma, she noted, only thephysical symptoms of a disease are addressed, such as itching or flaking in thecase of psoriasis, and the emotional impact is often ignored.

In the In America surveys we conducted, we asked peopleto describe a flare or exacerbation in their own words, and much of the timeits not about the physical symptoms, she said. Its often about feelingfatigued and the emotional impact that has on someones life and how they feelabout themselves.

Bridges agreed, noting the emotional toll that psoriasis hason patients is not something often discussed, and that as a child she oftenfelt isolated and depressed.

Psoriasis affected how I viewed myself as a person, sheshared. It affected my self-esteem, my self-confidence and my mental health ingeneral. It created a fear, or a constant nervous feeling at the thought ofsomeone seeing my skin and what they might think or say when they did.

Bridges recalled a mortifying incident from her childhood.She was in high school and appearing in a school play. The drama teacherdistributed makeup for the students to use as they prepared for the performance.But when the makeup was passed to Bridges, she remembered, the teacher grabbedit away, saying, No, you cant use this, I have no idea whats all over yourskin, humiliating her in front of the class.

Incidents like this one, Bridges said, caused childhoodanxiety, panic attacks and irritability, often mislabeled in her case as havinga bad attitude.

Bridges also shared the memory of another childhood trauma,when she participated in a high school beauty pageant covered with patches ofpsoriasis over 90% of her body.

It wasnt until she went clothes shopping with her familythat the implications of standing on stage in a sleeveless gown truly sunk in.

I remember just breaking down in the dressing room, sherecalled. My hands were sweaty, my heart was racing and when we got home Isaid, Im quitting the pageant, Im not doing this.

But when Bridges grandmother convinced her to stick it out,and offered to help cover the patches with makeup, she persevered.

The crazy part is I ended up winning, Bridges laughed.But I almost let my psoriasis make the decision for me. It still makes me sadwhen I think back to all the opportunities I missed out on or almost missed outon due to the fears and insecurities that come with living with a visibledisease.

Lawhon, who applauded Bridges for her candor, said that whenpatient advocates such as Bridges agree to share their personal stories, herteam ensures that contributors feel secure discussing their experiences. Thesehonest accounts are vital sources of support and education for fellow patients,she explained.

She noted that Health Unions research has found thatdepression, anxiety and fear are a common thread in all chronic conditioncommunities. The findings prompted Health Union to conduct a cross-communitysurvey that examined the relationship between chronic physical conditions andmental health conditions.

Of the 3,275 people surveyed, 90% of them indicated theyfeel some negative impact on emotional or mental health as a result of theirchronic physical condition, with more than a quarter of respondents noting anextreme negative impact and two-thirds of people being co-diagnosed withdepression, stress or anxiety.

The data showed us that its really key to recognize thatthese conditions are more than just physical symptoms, Lawhon said. Thedevastating emotional impact and some of the mental health conditions often gohand in hand with those symptoms.

Bridges said she hopes pharmaceutical companies will takenote of these findings and involve patients in panels or marketing discussions.She said that she believes this approach would help guarantee that brands arefocusing on what is truly important for patients with the condition.

She noted that making marketing teams and campaigns morediverse would be a step in the right direction.

When you think about the marketing for psoriasis, you thinkCaucasian people with red, inflamed patches, right? she prompted the audience.Many people, my friends and family included, have the misconception thatAfrican-Americans dont get psoriasis, because they dont see me when they lookat these commercials or pamphlets. My psoriasis doesnt look like that itsnever been red, its more of a dark purple or brown.

Bridges said this disconnect can impact thepatient-physician relationship, claiming that she was misdiagnosed for yearsdue to the fact her psoriasis outbreaks did not look like those in medicaltextbooks.

She also noted that even her treatment options were out oftouch, recalling a specific shampoo she was prescribed for scalp psoriasis.

As a black woman, I dont wash my hair every 2 to 3 days,but thats what the treatment called for, she said. So what that leads to isa lack of compliance. First you have adherence issues, and then you no longerhave an effective treatment.

This disconnect is why Lawhon noted, patients rely on onlinecommunities for support, and why taking the time to listen to what they have tosay would be extremely beneficial for pharma companies.

Our purpose within each and everyone of these communities is to bring people together through shared experiencesof life with these conditions, she said. We know now, thanks to stories likeAlishas (Bridges) and the data weve collected, that when people feelsupported and informed, they make better healthcare decisions. By creatingenvironments where people can get the information they need, we allow patientsto make better decisions in real time, and allow our pharma partners to betterunderstand the needs of patients, ultimately leading to better healthoutcomes.

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The intersection of data and emotion - Partner Content - MM&M - Medical Marketing and Media