The Most Powerful Group You’re Not Engaging in Your Pharma Strategy

Have you been burned by engaging with a patient group? Even with your best efforts, did your best intentions not come across? Today, how could your fears of reaching out to advocacy groups be allayed?

In my mind, there is one key for the success of communication between manufacturers bring a new therapy to market and the patient and patient advocate groups on the receiving end: education. Increasing communication, education of your expertise and transparency of goals is a must for both sides.

Here’s why: If you, the manufacturer, and in rare, the sole expert on a therapy, help advocacy groups understand how a new therapy comes to market, it can help with realistic goal setting for the patients.

Why not start today? From the beginning.

And while I have seen manufacturers who are so far out on their timeline that they don’t talk to the advocacy groups, I ask: Why not start today? From the beginning. Build the education bridges that link patients to a new understanding. Build the relationships to understand goals on each side.

At this point, I have to acknowledge that, indeed, engaging with patient and advocacy groups early in the process is a double-edge sword from a manufacturer’s perspective. However, if manufacturers take the lead in increasing the understanding of a market strategy, then better results can be realized. They can increase visibility into the process and how critical each stage is to ensure that a new therapy can gain approvals, create success for physicians, and satisfy payers. And if this can be done effectively, then, when there is a delay or challenges (as there are bound to be in rare disease) you will be less likely to lose the support of patients and advocates.

Better understanding

Patients and advocates can be brought to a new understanding about your perspective. When you are bringing a new therapy to market, you must do so in a safe, efficacious way, following all guidelines provided by the FDA. Unfortunately, what this means is that there will be patients left out of clinical trials because they don’t qualify. Some of those patients yearning for a trial will have to wait longer.

Transparencies then need to happen so they can work together and fully understand and gauge what they’re all going through as a community. When this is done, and the topography, or the journey to therapy, is laid out to advocates, they can then help patients to either reach the therapy or to find another way.

Start as Close to Today as Possible

So, when is the right time to engage? When do you start working with advocate and patient groups to determine what’s best for all? This is very touchy. Too soon can develop false hope. Too late can mean leaving patients out.

What can help, prior to engaging patients directly, is getting to the table with advocacy groups. Ask their opinions. Be open about where you are. I believe the earlier, the better. Ask: How can we work with you? Getting information on the nature of the advocacy group – personalities, who does what, how to meet them in the middle, can build trust along the way.

What does a real relationship with the patient groups, physicians, advocates, the pharma company, distributors and patient service group? It means you’ve hit your mark. It means patient-first care.

And the bottom line: if all parties are trying to do the right thing for the patient, you can’t go wrong. You’ll be profitable. You’ll have a sound understanding of the patients backing your product. You’ll have patients and physicians believing in your product. It’s a partnership in care that you’ve built.

What that means: A truly patient-first approach

And what does this all mean? What does a real relationship with the patient groups, physicians, advocates, the pharma company, distributors and patient service group? It means you’ve hit your mark. It means patient-first care.

If you’ve been in working in the rare world, you know this. You know the patients and patient groups mean everything. You know the influence that the few physicians attached to a rare disorder hold. The only way a therapy will be really successful is to work with these patients, work with these advocates and work with these physicians, and build a care plan from there.

Often what I see is that when you’re in larger pharma is a lack of customized programs. Patients are not engaged with on the same level as in the rare and orphan world. Instead, decision are made off analytics. You’re machine learning. But in rare, patient groups are so small, data pools simply aren’t large enough.

The amount you learn from a conversation is invaluable compared to a spreadsheet of data. Hearing from the patients and knowing how they want to be cared for is invaluable.

So, I call on you: Create a true partnership with the patient. The patient advocate. The physician. Create care plans that truly care for the patient. That you know are what the patients needs because you heard directly from the patient what they need.