Tag Archives: patient advocacy

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.

The Limits of Patient Insights

We know the buzzwords, your organization’s leadership has been stressing it for a while, it’s everywhere. Patient engagement, patient insights, incorporate the patient voice. You likely can’t make it through a work week or conference without hearing these phrases at least a dozen times.

The problem is no one is speaking about the limitations of patient insights. Whether you’re exploring clinical trial design, patient recruitment strategies, developing an assistance program, or marketing a product, at some point you hit a brick wall. Most people in the industry will acknowledge these limits amongst colleagues, but it is difficult to discuss this openly without fear of angering patient communities. Since I am a patient myself, I am not afraid to discuss it. I’ve seen it in every project I have been involved with. It’s time we have this difficult discussion, and strategize on ways to overcome the barriers. Time is money, and to move your projects forward, the strategy will look different.

The Challenges

  1. Finding the right patients: Depending on the project, it may be hard to find strong voices with valuable experience to give actionable feedback. What type of experiences do patients need to have to contribute to your project?
  2. Creating a dynamic among patients to encourage thoughtful discussion: Putting a group of patients in a room who don’t know each other is awkward, and hinders the exchange of ideas until everyone is comfortable with each other.
  3. Asking the right questions: Open ended questioning or just asking for feedback around a general idea is hit or miss. Sometimes patients will give you valuable ideas, but many times they miss the mark completely.
  4. Following up: After getting ideas and insights from patients, more questions remain. Perhaps you need more feedback. If the advisory board you put together has disbanded, what do you do?
  5. Legal/Compliance issues: This is one of the greatest challenges for Pharma. Often, these parts of your organization are dismissing patient input and ideas due to legal/ethical considerations.

The Opportunities

  1. Building a team of patients: Your ideal insights may come from patients outside of what you envision. They may have a different disease than your project is involved with and have a career unrelated to healthcare. However, their input is exactly what you need. Think about what caregivers or siblings could add to the discussion. Bring in someone who is a patient but also aware of your organization’s goals to help guide the discussion.
  2. Implement team building between your employees and patient advisors: The best results come when your patients and employees feel comfortable with each other. Establish trust and friendship, then the honest thoughts, opinions, and feedback will flow. You want both positive and constructive feedback, which comes out easier via an established relationship.
  3. Plan questions ahead of time: Work with your team to establish what you want to know, what you don’t know, and how patients can fill those voids. This is a critical part of planning patient advisory meetings and gathering feedback. Great planning results in great results!
  4. Establish a lasting relationship: Just because a project is over does not mean your relationship with the patients you work with has to end. Keep in contact and consider establishing a plan for regular interactions between your employees and patients. Especially if you have had success with using their insights to improve your projects.
  5. Bring Legal/Compliance in the room: If you spend the time meeting with patients and your team, bring in your legal and/or compliance colleagues too. They don’t interact with patients very often, if at all. The conversation will be beneficial, especially if they can ask questions and figure out ways your organization can implement their ideas.

These problems and opportunities may seem like common sense approaches, but actually implementing them can be arduous. Working with patients is difficult, most of them do not have adequate experience within the pharmaceutical industry. They have no knowledge of laws and regulations that govern your company, or how your teams communicate and collaborate.

If this is something your organization is seeking to improve upon, let’s strategize on ways you can maximize your work 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.