7 Secrets to Successful Patient Expert Collaboration

Jack Barrette, WEGO Health CEO, recently sat down with Dan Couchman Kendall of Digital Health to chat about how to identify, collaborate with, and leverage the professional skill set of Patient Experts. They discussed the challenges in patient-centric engagements and in working with the true experts – subject matter experts living with a health condition – to help face some of the industry’s toughest challenges.

The question of how to make patients part of the business solution has been challenging for the industry thus far. Jack talked about his evolution from working in the agency space to Yahoo! and how that experience led him to found WEGO Health. He stressed the importance of collaborating with Patient Experts and how this is essential to deploying solutions to market that healthcare consumers will adopt and use. We’ve uncovered 7 secrets to successful Patient Expert collaboration that will guide you in forming solid relationships with Patient Experts.


Patient Centricity:

But before we tackle the secrets, let’s define what a patient-centric approach means and why it’s important to have patients at the table.

According to evariant, a patient-centric approach is one where healthcare providers can establish a partnership to align with patients’ wants and needs. Jack explained that now with more people relying on technology, personalization is key to customizing individual customer journeys. By getting the patients involved, evariant also goes on to point out that there are increased positive outcomes in our care.

In addition, The American Journal of Pharmacy Benefits says for a true patient-centric environment, you need the trifecta: Clinical Outcomes, Personal Circumstances, & Life Goals. We can keep those concepts in mind as we go through these seven secrets to Patient Expert collaboration.


Let’s dive into the secrets:

Secret #1:  Engage Patient Experts as peers, not test subjects.

When physicians or researchers are trying to solve the mystery of our diseases, the person who understands it the most is the patient. BMJ Innovations claims we’re used to working with biopharmaceuticals, and stated that in the past they didn’t want to overwhelm the patient with too much information.

However, patients are living and breathing their illness every day and in most cases, know more about it than the researchers. It makes sense to partner up with the actual health consumer. Jack refers to these folks as Patient Leaders, super users, health activists and Patient Experts.

While it seems easy enough to connect and work together, finding the right patient to partner with can be challenging since there are a lot of factors to consider.

As a patient advocate myself, I’m often amazed at how researchers forget that we’re real people, and for the most part we all (both researchers and patients) want the same thing – to live and thrive. Jack reminds us that the Patient Expert is a partner in the project and should be treated as a colleague.


Secret #2: Compensate fairly for the requested expertise.

On a recent blog post on Tincture, it’s mentioned that patients are what the healthcare system should be all about. “We need to support patients. We need to engage with them. We need to understand what they care about. And, we need to ask ourselves what it is about health care that turns us into ‘patients,’ with all its connotations.”

The healthcare industry must recognize that Patient Experts are not just patients, but are professionals, consultants, and subject matter experts with valuable skills – skills that should be taken into consideration when determining fair compensation. When you combine the Patient Expert’s knowledge and experience with a given condition, you realize the true value of this person with whom you’ve partnered. Much like a consultancy, you’re asking them for valuable input that is going to impact the outcome of your project.

Jack gives an example of Julie Cerrone who once was a consultant for a large firm. Julie has since had to leave her large firm gig because of her illness, but that doesn’t make her unmarketable. She brings a unique set of tools and experience that can help assist healthcare companies to think outside their normal box, which will allow innovation and progress on the big questions we’re trying to answer. In the business world, you wouldn’t not pay someone for their expertise so why shouldn’t we pay our Patient Experts?


Secret #3: Share clear business goals & expectations.

As a project manager myself, I can really get behind this concept. It’s important for the researcher to communicate clearly to the Patient Expert the business goals, timelines, and expectations for the role. One of my favorite project management cartoons is about gathering requirements. The takeaway is we each interpret requirements or goals differently and therefore have different expectations.

Be explicit about deliverables, timeframes, and deadlines. The more organized and detailed you can be with the Patient Expert, the more smoothly the project will flow. Enabling the Patient Expert to have a firm understanding of all goals and expectations is crucial to the outcome of a project.


Secret #4: Provide a candid background on the company and its goals.

Part of building the foundation of any relationship is trust. According to Psychology Today, trust is essential to any healthy relationship and since we’re talking about health, it makes sense that trust plays an important role here, too. Psychology Today states that trust is comprised of generosity, patience and flexibility, dependability, consistency, and openness.

I believe these concepts, for both the healthcare provider/researcher and the Patient Expert, is important to building a long-lasting working relationship. Realizing that the partnership you are entering is one that will be strengthened through mutual trust and understanding of goals – on both sides – is key. The more you can share, the stronger the relationship becomes.


Secret #5: Share issues that should be avoided

Since we’re talking about sharing and being transparent, it’s also a good idea to talk about which topics are out of scope or should be avoided for the project. In any project, discussing risks and issues is key to getting everyone on the same page and avoiding any misunderstandings.

The Patient Expert should be educated in “what not to do,” taking into consideration items such as adverse events and regulatory issues. Do you want the Patient Expert to steer clear of certain industry taboos or topics that might encourage detrimental conversations? If so, spell this out so that all boundaries are clearly set.


Secret #6: Consider the health realities of Patient Experts

The reference above to the patient-centric trifecta from The American Journal of Pharmacy Benefits is a good reference – Clinical Outcomes, Personal Circumstances, & Life Goals. The reality is that most Patient Experts are still dealing with their illness on a day-to-day basis.

While they may have the best intentions, it’s important to keep this in mind and craft contracts to include arrangements in the event of a needed hiatus. It’s best to factor this into the contract so that accommodations can be made where and when needed. This can be an appropriate conversation during Secret #3, when you’re setting expectations.


Secret #7: Ask, don’t assume, about health privacy.

There’s a saying in the project management world… “Assume: Don’t make an ass out of you and me.” When you make assumptions, you typically make the wrong assumption. I’ll point back to Secret #4 to be open and clear with the goals.

Ask questions and make sure that everyone understands the direction, whether you’re talking about research goals or privacy. Removing assumptions will make for a better working relationship.

Prior to sharing any medical information outside the project circle, it’s imperative to receive consent from the Patient Expert. You may wish to have the Patient Expert sign a consent form specifically for your project. Confidentiality, and the protection thereof, should go both ways. Be sure to cover all bases in writing so that both parties are protected when it comes to health privacy.


Wrapping it up

These seven secrets provide a great way to create a successful working relationship with Patient Experts. They can be used as guidance for building the foundation towards a successful engagement and bringing truly patient-centric solutions to market.

Which secret will you incorporate into your patient collaboration?


Rebecca Seago-Coyle is an active advocate for breast cancer research. Rebecca began advocating for breast cancer patients and breast cancer research after her own breast cancer diagnosis in 2010 at the age of 35. She underwent a double mastectomy and oophorectomy, followed by systemic treatment. With a strong family history of breast cancer in her family, it has sparked Rebecca to advocate for breast cancer research, specifically for young women who are newly diagnosed. Outside of her advocacy role, she is a wife, project manager, marathon runner, cyclist and yogi. It’s important to Rebecca to inspire others to live a healthy lifestyle.

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