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!

Maximize Your ROI Working With Patients

No question the hot topic in healthcare is utilizing patient insights in various projects. Whether you’re building a tech platform or developing a new therapy, collaborating with patients is a must. The problem is, where do you find the right patients to work with? How do you locate the correct insights that add value to your company? While it may seem you just need to consult with your target audience, the answer is not that simple.

Modern Problems Require Modern Solutions

Acquiring patient insights should be treated with the same level of care and involvement as any other project requiring the input of subject matter experts. That being said, finding the right subject matter expert is critical.

From a lawyer’s perspective, you wouldn’t bring a plumber in to testify as an expert witness in a medical malpractice lawsuit. So why would you bring in just any patient to evaluate your project?

I’ve been involved with enough projects that I could author a book on horror stories involving patient insights gone wrong. Unfortunately, NDAs prevent me from sharing these stories in great detail. So let’s dive in to some of the major mistakes I’ve seen over the last few years, and how your organization can avoid them.

  1. Patients don’t understand the goal(s): Focus groups, advisory boards and interviews should have distinct endpoints for patients. This means outlining the topics of discussion and what your organization hopes to learn. I have sat in far too many advisory board meetings where the patients are confused by what the meeting organizer is asking. In the end, everyone is frustrated, time and money have been wasted with very little actionable information gathered. A simple “table of contents” for the meeting goes a long way.
  2. Meetings with no breaks: No one wants to sit around talking about their frustrations with healthcare for four hours without a break. Has that happened? More times than I can count. Never ignore the power of a break. It keeps everyone engaged and focused. Side note: providing snacks is a huge bonus but be sure to clear any dietary restrictions with patients ahead of time.
  3. No compensation: You wouldn’t dare not pay your consultants for their services, so why would you treat patients differently? I am shocked at certain companies who put together patient advisory boards and refuse to pay them. Meanwhile, employees who work with these “volunteer” advisory committees are posting about their company expense accounts on Instagram (you know who you are). Not only is that poor form, it makes it seem like you don’t value patient input. When you do this, you miss out on the most valuable feedback, the kind that can help you scale projects and receive great ROI. Like the old saying goes, you get what you pay for.
  4. Bringing in the wrong patients: Patients who get into arguments about which pharmaceutical company they hate more, talk over others, dominate the conversation, or just like to hear themselves talk. I could write blogs every day for a year just on this. It is critical to have a vetting process before selecting patients for certain projects. One on one interviews don’t require much vetting, but putting together an in person meeting or advisory committee where groups of patients will be working together warrants more attention. As a patient who also participates in these projects, it is a major headache. One rogue person can throw off the entire meeting and impede on the amount of information you collect. It is critical that you throughly screen potential participants and pay attention for any signs that there may be issues with some of the behaviors listed above.
  5. Confusing professional patients with “Patient Professionals“: Perhaps they work in healthcare, own a business, work in marketing, or practice law (shout out to my fellow lawyers out there battling chronic conditions). These are the patients who are balancing their “new normal” living with a health condition while participating in society. They are a gold mine of knowledge, experience, and fantastic analytical skills. These are the people I reach out to when I am putting together a team on behalf of a client. “Patient Professionals” not only share their perspectives living with and managing a condition, they can also contribute their expertise gathered from their career field. For certain initiatives, companies need to seek out these superstars and work with them.

The overall message here is that depending on your project and your goals, you have to find the right patients to work with. Too often I see companies rush to put something together, and they fail to get the feedback they need to move forward. Don’t make these mistakes, and you are on your way to obtaining great ROI working with patients.

Are You Actually Reaching Patients?

It’s a simple question, regardless of what product or service you provide, are you getting your message out to patients and meeting your goals?

Perhaps you’re struggling to grow your social media following, the number of patients downloading your app has slowed, or are having difficulty figuring out creative ways to recruit for a clinical trial. On the other hand, you may be hearing that you should incorporate the patient perspective into a project, but don’t know where to begin. It’s daunting to jump head first into a new initiative involving patients without much guidance.

So where do you begin? And what are the best steps to take when engaging with patient communities on your products?

1. Find the right patients/advocacy organizations. This is much easier said than done. Whether you’re looking to target a specific disease community, or addressing a shared symptom across multiple conditions, finding knowledgable, connected and engaged patients is hard work. Proper vetting and due diligence in this area can be tough, especially if you’re unfamiliar with a particular disease space.

2. Form partnerships that are beneficial to both sides. Patient insights are valuable, and patients/advocacy organizations should be compensated like any other consultant your company hires for work.

3. Have a contract. Clearly defined expectations establishing objectives, deadlines, compensation, confidentiality and length of engagement are critical. Too often, patients and corporations are not memorializing their agreements, which results in missed opportunities.

4. Set benchmarks to measure progress. Some projects require learning as you go. Work with your team and patients to set up progress checks along the way. If you find you’re not meeting important milestones, readjust your execution. In many cases, you will need patient and participant feedback to see how you’re doing.

Patient engagement is so much more than just sharing photos and links on social media channels. Unfortunately, most healthcare companies miss the mark, and hire folks who fail to fulfill a full cycle of communication. Depending on your goals, your engagement strategies will differ.

If you’re looking to elevate your patient engagement and interaction, let’s chat!

Sinkholes, Not Silos

At every conference, someone is talking about Pharma’s “silo” problem. Information, ideas, projects, all trapped within a small area just waiting for someone to come along and break them out. Patients hear about this all the time, and are often asked for input on how to help break down those silos.

The problem is not silos, it’s sinkholes.

For patients like myself, the quest for answers to manage and overcome our conditions goes well beyond just Pharma. It starts at cell line research, moves to translational models, then finally arrives to those Pharma silos. Every step in this process is a deep abyss, void of any guide to climb out of each hole to reach the next.

For patients and caregivers pursuing treatments, these sinkholes not only appear bottomless, they’re a behemoth. Understanding the complexities of each one, exploring and tackling all the issues before moving on, while avoiding costly mistakes along the way is overwhelming (to put it mildly). However, this is the road we patients and caregivers must take to find treatments and cures for our diseases. If tackling the silos in Pharma is the focus, most of us will die well before we ever get to human trials for drug candidates.

For patient organizations driving drug development, building bridges over these sinkholes to connect the dots is critical. Time is money, and rare disease groups struggle to reach fundraising goals. Not every disease has a celebrity parent or patient who can attract big donations to sustain programming. Few conditions are “large” enough in the rare community to have groups that can divide and conquer. So any setback can be fatal, and with a race against time to find life-saving treatments, no one has time to sit around discuss how to build a bridge.

So why sinkholes? Simple, the hard work conducted in various stages of drug development end up entrenched within groups and companies. As time goes on, it becomes difficult to relocate that knowledge and product across a bridge. The burden falls on patients and caregivers to make this happen, but they usually fall short of understanding the complexities of each of these sinkholes, and have limited time to invest in mastering them while managing the complexities of living with a rare disease. The problems get deeper and deeper as time goes on, so calling it a silo does not do it justice.

I tell my non-profit clients the best way to overcome these obstacles is to create educational programming for disease communities, and for my industry side- fund educational programing through disease-specific non-profits. Each group has varying levels of understanding on the drug development process, so there is no “one size fits all” system that can work across the board. Individually tailoring these initiatives pays dividends, but you have to do them right. Patient and caregiver communities are a driving force in drug development, so it is wise to utilize their advocacy throughout clinical development.

My prediction is over the next decade we will see a shift in how patient groups work with industry to defeat the sinkhole problems that plague their communities. We will also see industry become more focused on building lasting relationships to make this happen, which in turn will help with clinical trial design, recruitment, and retention.

Hindsight in 2020

Coming off a decade of amazing innovation in technology, new drugs/devices, and patient advocacy, this next decade has positioned itself to make drastic improvements for everything healthcare. Who will make the effort to maximize on this progress and elevate it to new levels?

Patient Advocacy and The Patient Voice

In the last ten years, we have seen an explosion of patient advocacy initiatives making major waves in everything from drug development to legislation. Life science companies are paying attention, and interested in engaging at an increasing rate. The big question is, how do these companies engage with patients and use what they learn from them to better their practices?

It is much easier said than done. I’ve spent a lot of time in focus groups, interviews, advisory boards, and meetings, listening and leading conversations around various topics. Everything from forming registries, recruiting patients to clinical trials, post-approval marketing and general outreach. Each project comes with unique challenges, especially for teams looking to really engage with disease communities.

Finding the right patients, extracting the right information to transform it into actionable items, and establishing plans for continued engagement are the biggest challenges moving forward in this new decade. I have watched some fantastic patient advocacy projects peak, and then fizzle out with no follow up.

Why invest time, money, and hard work into a project to only let it end and not continue with the momentum you created?

Whether you’re developing treatments, building our next groundbreaking tech platform, providing services directly to patients, or operating a non-profit group that is advancing science for a better quality of life, don’t let the propulsion of your hard work die off.

Unlocking The Patient Perspective To Maximize Results

How do you incorporate the patient voice into your project?

How do you locate the right patients to gather insight?

The answers are not so simple. Each project will require varying levels of expertise from patients and may require a lot of engagement. One of the problems I often come across is the failure to compile patient insights and extract the most valuable input. It seems to be a challenge for companies to separate the substance from the noise. That’s a time consuming and expensive mistake.

It is impractical to expect your teams to be able to work on their projects while simultaneously managing the complexities of gathering, developing, and implementing the patient voice. At some point along the way, something will be lost, which is why it is critical to incorporate team members to assist in these areas. It’s the easiest way to implement patient perspectives into projects, while helping your team remain efficient.

Let’s Take on 2020 Together

Is your organization looking to increase the strength of their patient engagement and further incorporate the patient voice into projects? If so, let’s work together to make that happen.

2020 is the decade of the patient, put your organization at the forefront of the movement.

ScriptMed 2019

I had the opportunity to attend the 12th annual ScriptMed conference in Miami Beach this week. It was a fantastic and dynamic group of professionals from insurance, pharmaceutical, technology, and specialty pharmacy companies. Also there, Kristen Hartman from WEGO Health, who hosted a panel of patients discussing Online Communities, Specialty Pharmacies and the Empowered Patient.

We heard about various topics like the challenges and advancements in medical training, trends in specialty pharmacy, improving patient care through digital technology, and the future of disruption in healthcare. No matter who was on stage and what the topic covered, every speaker came back to the overall goal: helping patients.

This was a unique opportunity as a patient advocate, because I had a chance to interact with and listen to so many key players in healthcare that traditionally do not interact with patients directly. This was especially true of the speakers from insurance companies. Often, many patients and advocacy groups gripe about not being able to interact with insurance companies outside of fighting for drug approvals, so this was a special treat. I had a chance to hear about their considerations and pain points in covering expensive orphan drugs and gene therapies.

I quickly realized that patient advocates and patient groups desperately need to engage with specialty pharmacies and insurance companies when it comes to expensive therapies. There seems to be a lot of collaboration between these groups and patients are at the center of the discussion. However, patients are not presenting their input, making everything a lot more complicated. One alarming point brought up was how companies are figuring out ways to terminate employees who cost too much for health insurance coverage. On the other side, some of these self-insured groups are asking insurance companies for analysis of Quality of Life and Productivity data. It is hard to imagine an insurance company or specialty pharmacy being able to collect and assess that kind of data, so patient groups have to step up to the plate.

I made a point to participate in the Q&A after two sessions, providing some patient perspective into the conversation. Unlike some conferences where you can hear a collective sigh when a patient speaks, the speakers and audience were engaged and eager to have a discussion! Although this conference is not geared towards patients, it is critical that we listen and participate. Especially because so many different industries are asking for our help in improving their services.

It is easy to get caught up in the mentality of “us versus them.” Especially as we hear more and more about the struggle to get new and expensive gene therapies covered by insurance. There also seems to be a lack of understanding from the industry side on how to engage with patient and parent advocates who are well connected, well informed, and can help push the needle forward.

The lack of education in this area is concerning, and patient groups need to engage with their base about who to quickly bring advocates up to speed on these issues. We also need to work on ways to incorporate the patient perspective into these conversations and projects in the future.

A huge thank you goes out to the team at Inovalon for having myself and other patients at the conference!

Karen Silverblatt of Inovalon with Patient Advocate and Nutritionist Diane Melano.

Trust: Another Buzzword

It seems like every year there is a fixation on a buzzword surrounding the rocky relationship between healthcare companies and patients. From my experience, 2018 was the year for “patient engagement”. Every conference, meeting, advisory board, and conversation focused on this idea. If you spoke to 100 people about what exactly “patient engagement” means, you would get 100 different answers. 

What does that mean? Patients were not being “engaged” consistently. We heard the phrase repeatedly, but oftentimes those using it completely missed the mark. 

So what is the 2019 buzzword? Trust. 

Healthcare companies must have the trust of their patients in order to succeed, but building it goes well beyond just talking about it. When I think about trust, I remember the scene in Mean Girls where they are doing trust falls in the gym. Some companies come off as Janis Ian and are celebrated. Others take an approach like Regina George, where patients will let you hit the ground because they can see how disingenuous you are. 

Which brings up the question: how do you create trust with patients and patient communities?

Instead of focusing on the buzzword, consider what actions build trust. Going back to my Mean Girls reference (forgive me), a trust fall requires that people are there to catch you. How can you expect to establish a relationship where someone will be willing to extend their arms, if they don’t know who you are?

I see a lot of healthcare companies get this wrong. Just existing is not enough. Having social media, putting out press releases, or handing out swag at conferences will not build the relationships necessary to have patients work with you. Additionally, building trust is a two way street. No one is going to catch you falling if they can’t rely on you to do the same. That’s where you become a Regina George, and quite frankly wearing pink on Wednesdays doesn’t always work. 

Building true connections by getting to know patients and patient communities is the key to creating a mutually beneficial relationship. Whether you are a hospital, pharma/biotech, physician practice or health data/IT company, everyone has a responsibility to engage on a higher level, more than just making an appearance or talking about the latest buzzword. 

In my experience helping companies build “trust” with their patient consumers, I have found that everyone wants to be engaged, they just don’t know where to start. It is like walking into a party where you only know the host, there is no dog to pet in the corner, so you are forced to walk up to groups of people and introduce yourself. Once you start, every party becomes easier, the communication is more streamlined and you start to make friends. The greatest hurdle is making that initial introduction, especially for companies where various departments need to partner with patients. 

When creating plans to build “trust” with patients, whether it be for research, marketing campaigns, advertising your healthcare app, or inviting people to take part in sharing their data, you have to build relationships beyond repeating buzzwords. Employees responsible for creating programs, products, and devices for patients should be involved with their target audience. This is especially true for clinical trial recruitment, where many patients cite a lack of trust with pharmaceutical companies as a main reason why they would not participate.

Think about it this way: if you were to do a trust fall, wouldn’t you want to know who was catching you?

More Than a Patient

The man who saved my life, twice. Dr. Ahn.

We often talk about great doctors, those men and women who treat us with dignity and respect. They listen to us, help us, work with us, and care. Those doctors are special, and when they retire or move away, it is difficult to replace them.

When I received the letter informing me that Dr. Ahn was retiring effective February 2018, I was sad but certain that another physician at the University of Miami would take good care of me. Would they be Dr. Ahn? No, no one could ever be him. I certainly never imagined I would be treated horribly and struggling to get Rituxan for a second time.

Which brings me to writing this blog. Today I had my one month post-Rituxan checkup, and my platelets are holding strong at 236,000. Besides feeling relieved and victorious, I also became very emotional. It dawned on me that none of this would have been possible without Dr. Ahn. Had I been diagnosed after he retired, who knows where I would be (or if I would even be alive). He gave me the tools to fight this disease, fight for myself, and fight for a better world for patients like me.

I thought back to the scared 27 year old in his exam room, unsure of what the future holds. I felt like my life was spiraling out of control. I questioned if life was worth living, if my existence was a burden on everyone around me. I was beaten down and demoralized by my diagnosis, yet this man saw something in me that I could not see in myself. He saw the real me, the fire and determination that while stifled at the time, was under the surface. It just needed to be cultivated within my “new normal”.

I didn’t realize it, but Dr. Ahn took me under his wing and started teaching me about my disease, how the human body operates, and what he had learned over decades of studying platelet disorders. He sent me home to research treatments not because he didn’t want to treat me, but he wanted me to find the answer myself and come back to him. He was building up my confidence and repairing my broken spirit. I was being taught to think like a researcher, to put myself in Dr. Ahn’s shoes. Little did I know, five years later I would be using what he taught me to save my life again. Only this time, without him there to coach me.

If I had to describe what fighting ITP is like, I would liken it to walking a tightrope. Under Dr. Ahn, I had a safety net. My fear of falling was minimal because he was there to protect me. This time, it was like showing up and discovering you have a rope and a stick. No safety net and no one to help if you fall. Despite this, I stuck to what I knew- everything Dr. Ahn taught me.

Here I am in remission, again.

While Dr. Ahn treated my ITP, he also assisted me in rebuilding my life with a rare disease. I often joke that he created a monster, but truly I would not be where I am today if not for him. His lessons and mentorship helped me fight ITP in his absence. He gave me the confidence to walk the tightrope without a safety net.

I’m forever grateful that he believed in me, and saw my potential at the lowest point in my life. Every day is a gift, thanks to Dr. Ahn.

The Doctor Didn’t Listen

When I found out my platelets were below normal this year, I went through a variety of emotions, but absent was fear. I was in remission for four years and three months, surely I could do it again. After all, I was in the same hospital system seeing a colleague of my favorite doctor, I thought for sure it would be smooth sailing.

I was wrong.

I had to push for weekly CBCs, not being taken seriously about how quickly my platelets could crash. Two weeks later, I dropped from 129,000 to 53,000. I was put on Prednisone, the drug that destroyed my body and left lasting damage. The doctor assured me it was only a temporary treatment. I thought once ITP showed him what it was capable of, he would take what I say seriously.

Again, I was wrong.

My platelets started to rise, and stayed stable on high doses, but that drug was killing me. I kept asking my doctor about Rituxan, my life saver. The one drug that Dr. Ahn and I knew would put ITP into remission. It dangled in front of me like a carrot. He again refused to prescribe me Rituxan, he was perfectly fine leaving me on the drug that was destroying my body. The doctor kept saying, “Rituxan is not a benign treatment.”

I was in self-preservation mode at this point, getting worse as the weeks went by. I found my new physician, who knew Dr. Ahn and his research. I opened up to him about my desire to use Rituxan and he didn’t string me along. Instead, we created a plan based on how I wanted to fight ITP.

Rituxan worked, again.

I spent four weeks watching as the infusions started fighting back. I also was slowly feeling like myself, regaining my identity beyond just being “sick”.

After all of this, my emotions are still a bit raw. However, I am reminded that Dr. Ahn gave me the tools to continue to fight this disease well after he retired. It wasn’t just preparation for a single victory against ITP, but a lifetime of fighting back.

So here I am, in remission.

The doctor didn’t listen, so I found one who did.

Remission Accomplished

Left: Bloodwork two weeks after IVIg. Right: Bloodwork one week after my final Rituxan infusion.

My second attempt at repurposing Rituxan was a success. The last two weeks were busy and I was tired, so I decided not to blog.

It was incredible to see my platelets return to normal half way through the infusions. I continued with the IV steroids as part of my pre-medication routine, so I did not have any reactions. However, I had to ask for it every time so I will be requesting that this becomes a standard part of infusion prep when we start a trial. While they generally just give Benadryl and Tylenol to cancer patients using Rituxan because they need to gauge their reaction, this is unnecessary for ITP.

On the left is my bloodwork taken before my third infusion, on the right was my CBC before my final infusion. Huge difference in one week!

Overall, I am relieved that I am back in remission again. However, this was quite the physical and emotional rollercoaster. I am still tired, and likely will be for the next few weeks. I am trying to take a short nap every day to keep my energy up. I have noticed that the brain fog is completely gone, and I am very “clear headed” now. The purpura is gone, but I do have some darker spots where they once were. I am hoping they will go away in a few more weeks. My taste buds are still a little off, but not nearly as bad as before.

I’m still pretty burnt out emotionally, this was a hard fight and it took a lot out of me having to constantly advocate for every little thing. I certainly don’t want to go through this again in a few years when ITP comes back, so I am pushing to get Rituxan on label.

I’ll see the doctor again next month, and it will be interesting to see what my platelets are at. From there, we will decide how often I see him. I am looking forward to a break! I will be seeing a new Rheumatologist to address my Fibromyalgia and Sjögren’s Syndrome. However, I have noticed less joint pain since I finished my infusions. Perhaps some of that was B-cell related as well.