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.

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.

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?

Industry: Friend, Not Foe

There has been a great deal of criticism of pharmaceutical and biotechnology companies in recent months. Most of the anger surrounds drug pricing, and many in the rare disease community have participated. While affordable healthcare is a priority and we need access, an even more alarming need is actually treatments for orphan disorders. Many rare disease patients are struggling day to day, without anything to help them manage their symptoms and conditions. Drugs for small populations cost money, the FDA is particularly critical of rare disease drugs making investments risky and the cost of treatments sky rocket. Continue reading