Assessing Patient Communities- Are You Listening?

With the continued focus on patient inclusion, patient centricity, patient engagement, and putting patients first, companies involved in every aspect of healthcare are creating programs to accomplish their goals. Whether the focus is creating a new app or developing a novel therapy, patient insights are critical to every endeavor. However, each patient community is different, so while some companies have built fantastic programs that optimize working with a specific population, many times those programs don’t translate the same way with a different group.

What seems to be missing are capabilities assessments of patient groups or disease areas. Understanding the ecosystem is essential to building relationships for whatever you’re trying to accomplish. Need to recruit for a clinical trial? You must understand which groups and patient leaders can spread the word. Looking for patient insights for a new technology platform? Your best bet is first grasping where patients are communicating online. Need patient data? Better understand the level of education that the patient community has on data sharing and who controls any registry platforms (if they exist).

Looking at the bleeding disorder community as an example, the groups that comprise our family are vastly different. Obvious differences include diseases themselves: Hemophilia, VwD, ITP, etc. Then add in the differences between men and women, children, teens, young adults, millennials, Gen-X, and baby boomers. Each of our groups share a common bond that we have a blood disorder, but our experiences, needs, and treatment options are very different. I have been fortunate enough to meet a lot of fantastic women with bleeding disorders through the Hemophilia Federation of America. It has been incredibly rewarding discussing our challenges, triumphs, and frustrations living with rare blood conditions. One overall theme was the need for diverse programming. We encounter different obstacles for treatment and care at different milestones in our lives, or unfortunately all at once thanks to COVID-19.

Industry’s response to learning about the patient odyssey are things like patient advisory boards and market research. While these tools are useful and result in solid insight, it does not truly capture the struggles of patients and their caregivers. I’ve had ITP for over six years, no one has ever asked me about side effects from treatments that have derailed my life, or what kind of things I would tolerate when trying a new medication. This is the gateway to a truly enlightening conversation around my disease. It’s also a better gauge of what kinds of information and supports programs are needed when launching a new therapy.

A real annoyance for patients are repetitive programs that seem great, but deliver little assistance. First thing that comes to mind are Apps. How many of these can we download and forget about before industry truly understands our needs? Pain and symptom tracking seem very popular for many chronic conditions, but if we can’t export that data to our doctors in a variety of formats (email, paper copies, uploading into EHR platforms), taking the time to track our issues is useless. Another missed opportunity is building platforms that allow caregivers to also track their observations/experiences with patients. For parents of children with complex medical needs, this has to be super simple, no one wants to sit down at the end of a long day and spend 45 minutes inputting information.

So how does industry truly capture the needs of patients? It starts with relationship building. The people making connections into patient communities need to be patients themselves. Empathy and understanding are the cornerstones of facilitating the conversations needed to truly map disease experience and comprehend what patients need. I have participated in countless projects where patients and industry collaborate, but the most successful ones are led by industry members who can personally relate to us.

Authentic Communication in Healthcare

If you follow along with #hcldr chats on Tuesday nights, you may have caught an interesting discussion on communication. It’s a core part of our daily lives, it is essential to success in a health care setting, but so many people and companies miss the mark. The big question is: how do we define and implement authentic communication techniques?

The first thing I want to point out is that conversations between doctors and patients are communications that remain confidential. Besides encouraging more dialogue in this dynamic, the issues with building authentic communication between patients and providers are pretty straight forward. You need time to have the conversation, trust between the parties, and opportunity to follow up.

Healthcare companies are in an entirely different universe. It doesn’t matter if you are in technology, patient services, biopharma, research, or data, authentic communication is critical to your success. The chat brought up some really good points about the difference between communication versus broadcast. I see so many companies missing the mark in this area. Either too many broadcasts or too few. Then problems with content that’s shared in comparison to original ideas. So let’s break down some common mistakes and how to correct them.

  1. No balance: Some companies (especially in the biopharma and HealthIT space) tend to stick with broadcasts of their accomplishments. While it is important to shout those victories from the rooftops, connections with patients and consumers will be facilitated through interactions that are conversation based. This is especially true if you develop platforms/programs that are to be used by patients in their daily lives. A personal connection and warm conversation can put you ahead of the competition.
  2. Not enough original content: Probably one of the most common slip ups I see on social media, companies who spend a lot of time sharing great information but not creating their own. It’s easy to get caught up in circulating great content, but you need to have an independent voice on all channels. Broadcasting accomplishments, having employees write blogs, asking engaging questions and then interacting via feedback are all easy ways to produce original content.
  3. Not soliciting feedback: You need to ask your audience what they think is missing. Do you engage enough? Are there things that people would like to know more about? Are you sharing too many articles on a specific topic? Think about that friend that you like a lot, but get sick of quickly because they only talk about one subject. Your communications can come off that way too, even on social media. This is why feedback is important. But don’t fall in to the next trap either.
  4. Feedback is not confidential: If you want honesty from patients, you need to keep their insights private, unless they give you permission. You will receive straightforward critiques if the conversation is kept private. I don’t know many patients who would feel comfortable facing a healthcare provider after they gave negative feedback about their experience. That being said, you should also leave the option open for people to elect to have their identity shared. Especially if someone is praising your work!
  5. Consistency is absent: I see a lot of healthcare companies engaging with patients in short bursts and then they go dark for a long period of time. Patients end up forgetting about you if you’re not consistently engaging. The best way to remain engaged is to plan ahead. Map out the year. Does your organization participate in awareness days/months? Do you celebrate certain milestones or anniversaries? These are easy ways to facilitate connections in between important communications.

Avoiding these five mistakes can help you craft authentic communication with patients. If you’re struggling to change the way you communicate, let’s collaborate!