Patient perspectives: Meredith Gould

Paul Tunnah interviews Meredith Gould

Dr Meredith Gould represents a rare type of epatient who has experience both of managing her disease and in working with pharma to produce communication materials around new treatments. In an industry that is by definition “clinical” and data oriented, her background in sociology also brings a very different and human slant to understanding how the communication pathways between patients, healthcare providers and pharma need to adapt to let the relationship evolve.

During this latest patient perspective interview, we talk about what makes someone become a vocal champion for others with similar diagnoses, the key challenges newly diagnosed individuals face and how medical information needs to be communicated to help different people understand it. However, we also explore communication pathways back from the patient to the pharma industry and exactly where patients should be playing a role in shaping the medicines of the future.

To listen to the full interview, please click on the play button below, with a shortened transcript of some edited highlights shown in print below.

Quicklinks

0:10 – Dr Gould’s background as an epatient

1:34 – What makes an epatient champion?

3:18 – Main challenges for newly diagnosed patients

6:32 – Communicating back with pharma

10:52 – Evolution of the patient, HCP and pharma relationship

Interview summary

PT: Dr Gould – thanks for joining me and congratulations on your recent wedding! First of all, how would you describe your journey as an epatient?

MG: Good morning. Well, if by epatient we mean engaged and empowered then I’ve been all that for a very long time, over 30 years, and I would say that’s thanks to a life threatening medical event when I was 20 and a chronic illness that was diagnosed in 1986. Those experiences really provided the impetus for me to learn more about my own health and wellness and I was quickly plunged into all major sectors of the healthcare industry. Early on I realised it was important to share what I discovered and learned with other people, not just those with similar health issues, but anyone who had gotten caught up in the very confusing and often very frightening world of medical care.

“Early on I realised it was important to share what I discovered and learned with other people…”

PT: There are obviously millions of patients online all over the world, but what makes someone like yourself really want to become a vocal champion for their disease, and for other patients, rather than just sit on the side lines?

MG: That’s a great question. In my situation, my training as a sociologist and experience as a college professor certainly contributed to my passion about being a vocal champion. But we also have to factor in my temperament – I’m a gadfly and I have a big mouth, because I’m a New Yorker! So I would say that education, training and experience provided the credibility and my temperament and deep desire to be of service is what motivated me. That’s similar in many cases and for many epatients they just become so fed up with the system, so discouraged, that they decide to take action. They become advocates for themselves, and then they realise that they need to be of service to others.

PT: What have you seen as the main challenges for people who are newly diagnosed and trying to come to terms with their condition?

MG: I see language and health literacy at the core of everything – how is the diagnosis communicated and how is it received? The main challenge for patients is getting past the confusion and, depending on the diagnosis, the fear that comes with it. But the world of online peer support has been there for decades and I was involved with an online health support group on CompuServe back in the mid ‘90s. Those online communities are now even more powerful because of social media and that helps patients meet and overcome those challenges and fears.

So you find people going on Twitter using the hashtag #diabetes (I use the hashtag #fibro) saying “I just got diagnosed with diabetes, help” and all sorts of information comes back. For fibro, which is a chronic illness which involves deep fatigue and can be very discouraging, I go on Twitter and say, “I’m having a bad day #fibro, anyone else?” and get a flood of responses. Or if there seems to be a correlation between my fatigue factor and changes in biometric pressure, sometimes a diet thing will seem to trigger it, I’ll go on Twitter and just say, “anyone else just slammed by soy sauce? #fibro”. Social media has made those communities very visible, active and engaged, which is very helpful for the newly diagnosed and also those of us who have been dealing with the diagnosis for a while.

“The main challenge for providers in the industry is providing education and information that’s very easy to understand and practical.”

The main challenge for providers in the industry is providing education and information that’s very easy to understand and practical. The materials, whether they’re in print or online, need to speak to the patient concerns, fears and needs. I see them getting closer to fulfilling that every day and social media has helped healthcare communicators become much more savvy about learning styles, understanding that people learn from audio and visual materials. So I’m seeing a broader range of communication tools and tactics coming out, which is helping to reduce the early panic response of the newly diagnosed.

PT: If we flip that scenario around, what do you see as the biggest challenges in terms of patients communicating back with healthcare providers and pharma?

MG: Again it’s a language thing and as a sociologist I always zoom in on other variables as well, age, sex, race and ethnicity, socioeconomic status – all that shapes the way information in delivered and received. Some of the very early work in the sociology of medicine on clinical interviews underscored gender differences around how women and men provide medical information. Women tend to be more relational when they describe their symptoms, the onset and progression whereas men tend to be more linear. So the big challenge for patients is understanding the way their provider receives information. When I start with a new doctor I say, “we need to have a conversation about communication, how do you prefer that we communicate? Here’s how I prefer to communicate.” I tell them they cannot give me too much information, I tell them my educational status and I tell them I consult Doctor Google, so if that’s a problem for them they need to tell me [laughs].

But I think the other challenge for patients, especially those with painful and debilitating chronic conditions, is we need to communicate our needs in a way that conveys the urgency and our personal experience without coming across as combative. I try to use humour and recently told the doctor “what you need to know about me is that humour is my default for pain, the more pain I’m in the more I’m going to be cracking jokes,” and she got it. So I know how to communicate that way, but for people who are newly diagnosed and just learning about their own condition it’s not that easy. We need to create ways to encourage patients and physicians to have that conversation about how do we communicate – what works and what doesn’t.

“I’d like to see the pharma industry invite patients to professional conferences to share what we know and help broadcast information…”

PT: How do you see the patients, healthcare provider and pharma relationship evolving in the future?

MG: Would it be too saucy to say I don’t see it evolving but I hope it does? I strongly urge pharma folks at every level, from drug development through marketing, sales and distribution, to realise that the universe of key opinion leaders (KOLs) needs to be expanded to embrace patients. I spent quite a few years creating materials, both print and online, for the pharma industry and we had listened to maybe two or three focus groups of patients and caregivers – I don’t think that’s sufficient. Those of us who have these conditions, or care for people with them, end up knowing much more about what works and what doesn’t, so we need to be invited into these conversations. The KOLs are not just the doctors – and while you’re at it pharma, compensate us for our expertise, just like you do the KOLs.

I’d like to see the pharma industry invite patients to professional conferences to share what we know and help broadcast information, be a pharma social media. For example, inviting the key social media epatients to a conference to live tweet it or blog about it would be a very smart move for pharma. There’s a suspicion and a distrust among patients for the pharmaceutical industry in general, so pharma needs more advocates and participating patients. Decades ago I worked on an Alzheimer’s project for a couple of years and came away with a tremendous amount of respect for the researchers and the marketers in the pharmaceutical industry within the company I was doing the work for. Epatients can help pharma achieve these goals, but you’ve just got to ask us.

About the interviewee:

Meredith Gould, Ph.D. (@meredithgould) is a sociologist by training, educator by experience, former PR agency executive, published author of eight books, blogger, and working writer. She serves on the External Advisory Board of the Mayo Clinic Center for Social Media (#MCCSM) and provides editorial services as well as social media counsel to healthcare industry thought leaders and their organizations. Dr. Gould has been involved with online health communities since 1993 and has recently gone public about her adventures with fibromyalgia, diagnosed in 1986. For more information: http://about.me/meredithgould. Email: meredith@meredithgould.com.

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