The Trust Bridge: Finding Patient Advocates in Healthcare

What happens when the most powerful marketing tool—customer testimonials—is restricted by privacy laws and personal boundaries? Robin Malone, CEO of RJ Communications, pulls back the curtain and shares with host Peter Woolfolk the unique challenges healthcare brands face when trying to showcase real patient stories.

With nearly three decades of experience in healthcare communications, Malone reveals how she's mastered the delicate art of building "trust bridges" between healthcare providers and potential patient advocates. "This can't be transactional," Malone emphasizes. "You have to build the kind of trust that takes time." Her approach focuses on finding what she calls the "loud voices in the room"—those patients already enthusiastic about sharing their experiences—rather than trying to convince reluctant individuals.

The conversation explores the regulatory maze created by HIPAA laws that protect patient privacy while creating significant hurdles for marketers. Malone walks us through the multi-layered permission process required before a PR professional can even contact a potential patient advocate. She shares a fascinating case study where her team successfully reframed a pharmaceutical campaign to focus on patients' lives rather than their medical conditions, creating powerful advocacy without compromising privacy.

For healthcare communicators, marketers, and PR professionals working in regulated industries, this episode offers invaluable insights into building authentic advocacy programs that respect both legal boundaries and personal comfort levels. Malone's hard-earned wisdom demonstrates that the most compelling healthcare stories come from advocates who genuinely want to share—never from those who've been persuaded against their better judgment.

Have you encountered similar challenges in your industry? We'd love to hear your experiences with navigating regulatory hurdles while trying to showcase authentic customer stories.

Information on NEW podcast website.

Chapters

• 1:08 Welcome to PR Review Podcast
• 2:14 Challenges in Healthcare Advocacy
• 6:29 Building Trust with Patient Advocates
• 11:13 Life-focused vs. Health-focused Campaigns
• 15:58 Navigating HIPAA and Patient Permission
• 21:34 Thirty Years of Healthcare PR Experience

Transcript

Announcer: 0:37

Welcome. This is the Public Relations Review Podcast, a worldwide award-winning podcast. Our experienced guests cover a wealth of current useful topics, including adapting to technological advancements, digital and AI matters, misinformation, media relations, fake news, crisis communications and much, much more. And, of course, your feedback is always welcome. Now here is your host and producer, peter Woolfolk.

Peter Woolfolk: 1:10

Welcome to our listeners all across America and around the world. Now, apple has ranked this podcast among the top 1% of podcasts worldwide and ListenScore ranks the podcast as one of the top 10% most popularly monitored shows out of the 3.5 plus million podcasts globally. So thank you to all of our guests and listeners for your continued support and if you enjoy the show, please leave a review. Now a question. I believe we all agree that most companies and organizations want actual customers to advocate for them and validate their products and services. Well, many have adopted this process. Well, what about the health sector, with numerous regulations and other legal barriers? How can these organizations overcome frustrating potential barriers to attract advocates? Well, my guest today has faced these hurdles. She operates the Boutique Health Technology and Wellness Public Relations and Communications Agency. They sit at the intersection of health culture and the community and they use their deep roots in all things health to grow healthy brands. So joining me today from Chicago, illinois, is Robin Malone. She is the CEO of RJ Communications. Robin, welcome to the podcast.

Robyn Malone: 2:29

Thank you for having me.

Peter Woolfolk: 2:31

Well, you know, one of the reasons that I wanted to have you is because I've never seen. This issue had never come up before, so you never know who's listening, and I thought that you know, since you've been in the trenches. Let's start with first you providing an overview of the health and wellness climate that you work in.

Robyn Malone: 2:48

For sure. So I've been doing this work so specifically public relations and communications in the healthcare space for almost 30 years and I started my agency about five years ago, and I don't have to tell you how difficult it is for healthcare companies and brands to find and to activate the advocates on their behalf, and that is, and has been and continues to be an uphill battle in terms of the people who are using XYZ treatment or ABC facility. Wanting to say this has really helped me. This has really impacted my life. It is a constant battle specific to health care in the US.

Peter Woolfolk: 3:43

Now, when you say that specific battle, are there actual legal hurdles that prevent somebody saying, hey, look, uh, you know, I really like the job, the doctor so and so did. For me they're wonderful.

Robyn Malone: 3:55

Yes and no. So if a patient wants to say wants to share about their experience, right. So if I went to Dr Jones and I had a wonderful experience and I think Dr Jones is amazing I have full control over what I want to say about my own health and my own healthcare. It gets trickier when Dr Jones says it on your behalf that he can't do he certainly can't do without your permission. And how much detail he can share is very limited because we have HIPAA laws. Share is very limited because we have HIPAA laws and HIPAA is designed to protect patients' personal health information. So there are really important legal restrictions and regulatory guidelines that are specifically designed to protect my personal and your personal health information. But if I'm on board, then I can say what I want. And if the doctor reaches out to me and says, can you speak on my behalf, at that point I can say what I want. That's on me, um, but the doctor or the company or, you know, the marketer can't I see, see.

Robyn Malone: 5:15

That's a different thing, and the reason that you hear them talking about patients but they'll be anonymous or they'll be very vague or they'll talk about patients in the advocate is because there are very clear restrictions in terms of what you can and can't say about a patient's health.

Peter Woolfolk: 5:41

Well, let's talk about some of the maybe a little bit more specific, some of the more difficult projects that you worked on. That something like that was facing you and how you were satisfied getting that done satisfied getting that done.

Robyn Malone: 5:58

Yeah, you know it's interesting because, as a marketer and a PR person, I am the hired, I am, you know, collaborating with. I am working on behalf of a company or a brand or a service, right, but in a lot of ways I sit between them as the bridge between the patient who uses the product or, you know, uses the service or gets treatment at this facility or this hospital, and that facility, service, product or company. I kind of sit at the center, and so building this bridge is a tricky one to build and it's not. It can't be transactional and it can't be a one and done. You have to build the kind of trust that takes time to build In order for someone, irrespective, quite frankly, if I had a wonderful experience with you or this product or not, I may not want to talk about this, I may not want to share my story because it's mine, right, and it's completely my story.

Robyn Malone: 7:08

And so some of the things that we've done in the past and currently again, is to one.

Robyn Malone: 7:17

There's just basic expectation management with, in terms of, you know, xyz hospital, to say they may not want to talk about that and they may not want to be, nevermind sharing their own personal experience.

Robyn Malone: 7:33

They may not want to be on record being associated with this treatment because this disease or this illness may have a stigma that they don't want on them. And so there's an art and a science to one, finding the ones who are open or who want to be more open and I call those the loud voices in the room open or who want to be more open, and I call those the loud voices in the room. And two, working with them to ensure that they feel safe and protected in the sharing of that story and that they don't feel used and that they don't feel like a transaction. And so oftentimes we let them write the story and in air quotes, right, we let them write it and then they'll share it with us and we will work with them to maybe refine it, just so that maybe it's a little bit crisper, it's a little bit more compelling, we get to the point faster, but it's not our job to write anyone else's story.

Peter Woolfolk: 8:35

So what I'm really hearing you say here, then it really depends upon the particular service or activity that took place with the patient and the hospital that they might feel that it's too private to talk about, so they're not going to touch that one. But if it's something that you know happens to somebody every day you know I slipped and you know broken foot or broken a leg or something, but they did a great job that one might not be that difficult to uh encourage them to to speak up in behalf of the hospital or the doctor so.

Robyn Malone: 9:09

So what I'll say is I think there's some. I think there's some clear, there's some obvious differences between a person who's getting treated for diabetes or obesity versus someone who broke an ankle right. Like there's something that's deeply personal about having a chronic disease like obesity or diabetes, and someone who is just like the rest of us slipped on somebody and broke their ankle.

Robyn Malone: 9:34

So there's some clear differences there, but I wasn't really saying that it was condition. Specific is just like the rest of us slipped on somebody's sub-roofed ankle. So there's some clear differences there, but I wasn't really saying that it was condition-specific. What I was saying was that it's very personal to that person, irrespective of what the condition is. Now, if the condition is, you know, considered very personal or chronic or whatever, then yes, that's a harder hurdle to clear. But even those who just sprained an ankle they may not want to talk about that.

Robyn Malone: 9:59

So it isn't about what happened to them. It's about that person. It's about what is important to them, what's personal to them, how much they want to talk about, what it is that they experienced or didn't experience.

Peter Woolfolk: 10:28

And so again, much less about much, much less about what is happening or what has happened and much, much more about the person, which is where the trust and the relationship and the conversation comes in. This idea before the activity takes place, or do you wait until it happens, after it takes place, to decide whether you want to ask them to be an advocate for, for the services they just got?

Robyn Malone: 10:44

yeah, just the most. Excuse me, mainly before, because in our work and it's not just services, right it's often like they had a great experience being treated with this drug or that device. In an ideal world, when you are responsible for telling the story of a brand, product, company or service, you want personal experiences to help lead the way, personal experiences to help lead the way, and that means I want people who have lived experiences in this facility or with the shrug or whatever, and so that's always what the aim is. It is always what we hope to get, because the person my neighbor who had a great experience with this drug is far more impactful than the head of the company talking about this drug.

Peter Woolfolk: 11:42

Now, do you have any examples of some successful opportunities that you've had without identifying either the person or the organization, what it was that they had done, and, uh, because they're willing to do it, it really, you know, shined a light on the organization? Do you have any stories that you can tell about that and how you got uh patients to uh to come on board?

Robyn Malone: 12:07

sure I did it.

Robyn Malone: 12:08

Um, I mean, I've done this for so long, but a recent example is a large global pharmaceutical company that we work with.

Robyn Malone: 12:20

This wasn't drug or therapy or therapeutic area specific, but it was about the company, which, in a lot of ways, is even harder to get someone to advocate for right, because they're, like you know, especially in the industries like pharma that are so maligned right when the trust levels are very, very low. So we did a campaign where we wanted people to use their social media and the company's social media to talk about healthcare on behalf of the company, and I think ultimately we were successful because it wasn't generic. It was like this is about your life and not your health, if that makes sense, and so we were able to craft a campaign where they were talking about their lives, but they were doing it on behalf of the company, and that was where the success landed for us, if that makes sense, it was because this was not personal to them or not about their health. This was about their life, and so that really was a very successful campaign.

Peter Woolfolk: 13:47

So it really becomes, then, how you go about structuring what the campaign will be about. As you said, about their life, not so much about theuring what the campaign will be about, you know, as you said, about their life, not so much about, uh, the hospital or the services they provided, but how it added to the quality of their life as a result of having the service that's right, that's right.

Robyn Malone: 14:03

so you, you kind of shift it and reframe it so that it's not about the drug and it's not about whatever illness they may be living with, it's about them as people. So that really takes some careful planning and that was a success. I'm sorry.

Peter Woolfolk: 14:23

I was about to say. I mean that takes some careful planning to make sure that you can maybe convince the person or talk to the person or let them know. Here's what we'd like you to do Once this is done. How is this? Once this is done, how will this impact the quality of your life? And if they buy into that, they really don't have to talk about specifically. You know that I like the surgery or I like the docs that perform the services.

Robyn Malone: 14:49

Yeah, it is, it's. It's a very it can be a tricky needle to thread. It can be, but there is a tone and posture of care and understanding and relationship that over the years I've learned and you know now my team knows to approach it with. This is not about a business transaction. This is not a clinical transaction. This is not a healthcare transaction. We just want you to talk about your life and we'd love to partner with you to do that if you're comfortable.

Peter Woolfolk: 15:32

When you say that you'd like to get them to talk about it. How long does it take, perhaps, to convince someone from hearing this the first time to when they actually say, yeah, that's not a bad idea.

Robyn Malone: 15:46

To be honest, I don't convince, because when someone sets a boundary and they say that they're not comfortable, two things go through my mind, the first of which is they've already said no. And the second part is, if you know, if I managed to kind of get them over the line and convince them, there's nothing that they're they're, they're probably not going to be comfortable. And and those people aren't good advocates because they don't really want to do it. They're doing it because I've made a good case to do it, but I, you know this goes back to this idea of the loudest voice in the room. I want those who are already saying, oh my God, this was so great.

Peter Woolfolk: 16:31

I you know, my life is better because, great right I.

Robyn Malone: 16:32

You know my life is better because I took. You know I, my doctor prescribed this drug. Those are the. That's, you know the first. Stop on this advocate train, if you will. It's the. It's the first. These are the first people I want to go to. If I have to convince you, then you are not going to be a good advocate, because you're not one.

Peter Woolfolk: 16:57

Well, the bottom line here is that they had a good experience, and because they liked the experience so well, they're completely willing on their own, to actually say that it's been a good experience. So the difficulty is not there. It's just a matter of you asking them if they're willing to share it with others.

Robyn Malone: 17:14

Yeah, and I think the issue is not whether they've had a good experience right. Obviously, if they didn't have a good experience and they're not the right people for us to approach as advocates, so they're not people we approach anyway. But within the hundreds or thousands of people that have had good experiences, there's going to be a tiny fraction of them that actually want to talk, or that you know, that want to be, that want to talk about their lives, that want to be associated with this hospital or this pharma company, irrespective of how great of an experience they may have had. And so it's not about the experience. The experience is it is assumed that if we are approaching someone to be an advocate, they've had a good experience. So that's the matter.

Robyn Malone: 18:02

It's whether they want to talk, and that's, and that's highly personal.

Peter Woolfolk: 18:07

So it's a matter of your, your being in now. How do you get in touch with these particular people? I mean, does the organization contact you and say, well, we'd like to find somebody some patient we've had that's willing to talk about it because they've had a good experience how do you get in touch with these particular I'm going to call them patients to ask if they're willing to move forward. Calling patients to help ask if they're willing to move forward.

Robyn Malone: 18:33

Yeah, so it can be pretty complicated because of HIPAA laws, but Oftentimes we at my agency we're the ones that are saying it would be great if we had some patients or some people with experience to talk about them or to talk about their experience or to talk about whatever, and so we are the ones who are advocating for this, advocating for this.

Robyn Malone: 19:02

And then there is, depending on what we're talking about, whether it's a drug, whether it's a doctor it's rarely a doctor, but it's whether it's a drug or you know a hospital or a system, or maybe a you know a device or technology. There is a pretty, a pretty, pretty intense process to get. We have to work with compliance and legal to get permission to even reach out to them.

Robyn Malone: 19:36

So they have to opt in to be reached out to, and then we reach out to them and then they have to. Then there's a second step where they say okay, I can, you can talk to me about this. So it's pretty intense and oftentimes what we've gone in and done is to say you should ask them before they embark on the service of the treatment or whatever, so that we have the list of people who we know might be willing to talk. Because if not, then there are two or three extra steps because the patient has to allow you, the patient has to allow the pharma company, the hospital, the doctor to share their information.

Robyn Malone: 20:28

So they have to say yes, and that yes is without me. So the pharma company has information. They have to reach out to them and say, hey, this is what we'd like to do. Would you be open to talking to whomever? And they have to say yes, and with that they have to give permission to share their healthcare information, because I don't know anything?

Peter Woolfolk: 20:56

I don't know who.

Robyn Malone: 20:57

It is Right Because legally they can't share anything with me until the patient gives permission.

Peter Woolfolk: 21:01

Right, okay, so it really doesn't start with you. It has to start. Really doesn't start with you. It has to start with somebody asking this particular person and then once they see, that it's a goal, then they can bring you in to work out the details of how to go about it, so to speak.

Robyn Malone: 21:16

Right, the process doesn't start with me, the strategy starts with me?

Peter Woolfolk: 21:20

Okay, so good. Now, how long have you been doing this?

Robyn Malone: 21:23

Almost 30 years.

Peter Woolfolk: 21:24

Okay, so good. Now, how long have you been doing this? Almost 30 years, oh my goodness.

Robyn Malone: 21:34

Now I'm sure you've got stories that are both wonderful to hear about and some of those I said, oh my goodness, I'm sorry I got involved, but all of them are really interesting learnings. And even the bad things, where you feel like you have scars, are the learning is what to avoid, and it's especially important with my. You know my agency. We're a small agency. I can tell by the process and the interaction with a potential client not someone who's already a client how they will be as a client. I've just been, I've just been doing this too long, so it's and it's, and that information is so wonderfully telling and then I can make the decision about whether I'm going to continue to pursue or not.

Peter Woolfolk: 22:36

Right, Okay. Well, let me say this Robin, you know we're coming to a close on this thing and I really enjoyed hearing about this process. I didn't know it was so difficult to get people to talk about things that went well for them, but I think you've explained it. I certainly enjoyed it and I hope that my listeners have enjoyed it. Any closing remarks from you?

Robyn Malone: 22:56

No, this is great. I really enjoyed this and it's taken me down like a memory lane that I feel like I need to remind myself of in terms of building a trust and getting out of the transactional mode that sometimes the work forces you into. So this is a good reminder for me. So I really appreciate this conversation.

Peter Woolfolk: 23:19

Okay, well, I'm certainly glad you had a chance to come on and share this information with our listeners. My guest today has been Robin Malone. She's the CEO of RJ Communications and I certainly want to thank her, and I want to thank my listeners again for joining us and if you've enjoyed the show, we'd like to get a review from you and don't forget to share this information with your friends about the Public Relations Review Podcast.

Announcer: 23:46

This podcast is produced by Communication Strategies, an award-winning public relations and public affairs firm headquartered in Nashville, tennessee. Thank you for joining us, you.