Taking a patient-centric approach to privacy

[00:01] Where there are general ideas around best practice you also have to be very patient / individual centric in terms of the kinds of individuals you are dealing with in that Circumstance in that business having a clean and easy to understand user interface. [00:19] And approach to consent is key right. You don’t want to have. [00:23] Pre-checked boxes saying oh yeah so of course I agree to share my info with you and please set up to somebody else if you can. [00:36] Welcome to the MM+M Podcast my name is Jack O’Brien I am the digital editor. [00:41] At MM+M, I’m pleased to be joined today by a couple of special guests. I’m Anthony Matyjaszewski I am VP and chief compliance officer at the Network Advertising Initiative which is a self-regulatory body and trade association for abtech companies. [00:54] Hi, I’m Melissa Mitchell I’m the chief privacy officer. [00:58] At Phreesia, we’re primarily a SAS company but we do many things in the Healthcare space. [01:09] So happy to have you both on the show I want to give our listeners is a little bit of context before we get into. [01:15] This conversation and really how the focus is on presenting patients with high quality relevant information at meaningful times. [01:22] With significant benefits including helping them have important provider conversations and make decisions about their health. [01:29] However responsible data collection in the use is critical to maintaining patients Trust so I want this podcast to really explore the different ways to deliver tailored content that activates educates and empowers patients while also prioritising privacy and consent with all that in mind Melissa I want to go to you first with our question which is why is showing patients trustworthy relevant content so important. [01:52] And how does it help them? Take it active role in their care? [01:55] I think at the core. I think a lot of people believe this information can be powerful. [02:01] At freesias, we have great information. We have great data and we have the ability to deliver it to those. [02:06] who it might be relevant to [02:09] to the extent, they want to see it which is really the important piece here that we’re going to dive into more I know talking about. [02:15] consent and transparency but [02:18] To the extent, they do want to see it. We have great relevant information and to be clear. It’s not just relevant information that we have to show patients or people it actually information that we think can drive. [02:29] Their health outcomes and and change their lives frankly for instance. [02:35] We have some data that shows. [02:37] More than 50% of patients who engaged with a freesia public service announcement about Alzheimer’s disease. [02:44] That they were likely to talk to their doctor about it. [02:46] 78% of women who saw a message about breast cancer risks said they were likely to talk to their doctor about it and asked for a screening. [02:53] so [02:54] this showing of this information to these folks. [02:57] Really does have an impact on their lives and we want to be able to do that. [03:02] To the extent, they want to be empowered by that information. [03:06] Excellent Anthony is there anything you want to add on to that point. [03:08] Yeah, I I think advertising technology and data companies can really help. [03:14] tailor that messaging and help [03:16] tailor the audience to receive that messaging and [03:20] the key is to do it in a privacy friendly manner, but [03:24] you know sometimes especially now as we’re seeing state laws proliferate most recently I think. [03:30] My health my data just went into effect in Washington state about a week ago. [03:36] on April 1st [03:37] Pose a real challenge to that so as a result of that law which has very. [03:42] expansive definition of consumer health [03:44] data and also private right of action [03:47] most ad tech companies for example are taking a Pause they’re not offering services and Washington right now. [03:54] Until they see how things play out and and the result of that is. [04:00] you know it’s basically going to be really difficult to fill clinical trials in Washington [04:06] just as an example. [04:08] Particularly, I think for more rare conditions like those that are covered by the orphan drug act. [04:14] Where doing a what we call a run-up network campaign where you just show the ad to to? [04:20] You know all consumers. [04:22] may not be practical when [04:25] you’re trying to fill. [04:26] A clinical trial for a new treatment for Tourette’s syndrome for example right or some other conditions. [04:32] That only affect the small fraction of consumers. [04:36] And so you know being able to even using demographic characteristics like age gender of suburban versus urban general area of residence which part of the US you live in presence of pets presence of children. [04:51] Things like that can really really help not necessarily pinpoint with accuracy, who might have the condition but at least eliminate the folks that are not like to have it. [05:01] and so [05:03] sometimes [05:04] I think the big takeaway is [05:06] trying to balance that right and and [05:10] legislation and regulation to to allow for those beneficial uses while still protecting consumer privacy. [05:17] But sometimes overreach or over broad laws and regulations. [05:23] Can actually have a really detrimental effect on? [05:26] general [05:27] health and well-being and a state or a country [05:31] because they limit those possibilities yeah, and I want to pick up on that thread and curious Anthony if you want to take the Sabbath this question in terms of how you define. [05:41] responsible data collection and use going you know that’s always the [05:45] the issue and ever these policies are being discussed. What is the definition from your perspective? [05:49] There are certainly a lot of factors and and you know privacy law and regulation is pretty new on stem complex but [05:57] I think that the two key things or Pillars maybe supporting responsible practices. [06:04] Are you know what I would call transparency / notice and consumer choice? [06:10] transparency and notice really is about providing consumers with [06:14] the right information part of it could be long form notice precisely describing your [06:20] Your activities what kind of data you may collect you may share it with how long you might keep it. [06:26] That kind of stuff where transparency. I think is more sort of in the moment and you know providing info you know why am I seeing this ad right now? Is it because I researched? [06:38] a condition on a health information website is it because [06:42] I fall into a certain demographic category. [06:45] Is it because I’m reading currently reading an article about that condition and that’s usually pretty self-explanatory. [06:53] And so providing that information is key and I think consumers understanding why they’re getting ads. I think also helps them. [07:01] Put them at ease. [07:02] Consent or choices another key Factor right often times at least historically in the ad tech space that’s been an opt-out choice. We’re consumers can. [07:12] Choose not to receive target at advertising in the health space. I think even going back quite a few years. [07:19] It’s often been more of an opt-in regime where consumers are asked to affirmatively. [07:25] um consent to [07:27] receiving marketing messages or advertising or other communications down the line. [07:33] And and that makes all the difference I think. [07:35] frankly [07:36] you know [07:37] I think it consumer. [07:39] Trying to figure out why you know proverbially alright and add as following them around the internet. You know is not. [07:46] I think the right consumer experience we want them to know yeah. Oh alright. I just saw physician for for this condition and I agreed to get additional messaging or I just read an article about this and elected to to get notices when new treatments or new clinical trials are available. [08:03] and sort of meeting consumer expectations and [08:07] being open and honest with them. [08:10] About what data is being collected and used and and shared if done right. It’s you know the Best of Both Worlds consumers their privacy is protected. They feel comfortable with sort of what’s going on in the background. [08:22] While also receiving the right messaging at the right time that that can actually help them improve their health outcomes. [08:28] Melissa is there anything you want to add on to that point? [08:31] yeah [08:31] I mean I totally Echo everything that Anthony said but you know. [08:36] I think that we’re in a really interesting time and he kind of noted this that we have all these new state laws. [08:42] And they actually do define it and they define exactly how you need to collect data and how you can use it and then what you’re noticed should say and a lot of them are very. [08:50] specific and [08:51] In one in one sense, that’s wonderful in another sense sometimes it can be challenging to meet all of those different requirements especially if they’re slightly different. [09:00] but I think [09:02] you know in my position as a privacy officer I often go back to the core of what I think they’re all about and what I also hear. [09:09] regulators talk about when they talk about why they [09:13] drafted these in the first place and really what the heart of what they’re trying to get to is and they just really want people to understand right so the challenge. [09:22] And I think often how I define it in my everyday work is taking a step back and saying okay. We’ve checked all of these boxes. [09:29] For all of these regulations, but do they all make sense together. [09:33] You know if I’m coming into this not understanding anything. [09:36] What they make sense to me? [09:38] with the answer that questions like Anthony pose like why am I seeing these ads you know what happened after I consented to something or opted into something and [09:46] does that [09:47] rationally [09:48] follow from what I just did and I think [09:51] while that sounds straightforward it can sometimes be quite a challenge but also a really good guiding light for a person. [09:58] in my role to keep coming back to [10:01] to really define as you get these regulations layered on. [10:05] And Anthony I want to pick up on that thread and it’s it’s kind of a loose to what one of your answers from earlier in terms of best practices. [10:12] For ensuring privacy practices are patient-centric you talked about not you know following consumers all across the internet with advertising and stuff or some other ones that come to mind from the best practises perspective. [10:22] Yeah, and and happy to touch on that I did just want to add to Melissa’s previous point of you know what the regulators and and legislators are trying to address. [10:32] I think we definitely seen an uptick in privacy legislation and regulation both at a state and federal level. [10:39] since the Supreme Court Dobbs decision about abortion restrictions [10:43] not to get political or you know how how people feel about that, but I think broadly there’s been a concern. [10:50] That people may face you know. [10:54] criminal or other liability for seeking reproductive care [10:59] And I think there’s a lot of concern about potentially location info from from smart devices or browsing info from a variety of devices. [11:08] being used against consumers and so [11:12] I think that impetus behind a lot of the recent legislation and regulation is strictly tied almost to. [11:19] You know to preventing. [11:21] consumers inadvertent and behavior or purchases or movements [11:26] potentially being used against them with respect to reproductive health and things like that. [11:32] and unfortunately a lot of those laws, are you know what I would say maybe over broad or [11:38] overly far reaching and and not as narrowly focused as they could be. [11:43] But that’s also always a useful filter when thinking about just privacy and the health space and general is you know what kind of negative. [11:51] effects could a consumer feel because [11:54] they browsed something or went somewhere or had a certain health procedures so [11:59] That that’s probably a useful thing to think about. [12:03] But back to your your question about you know best practices and things that that companies. [12:08] can do [12:09] I would say [12:10] having a clean and easy to understand user interface and approach to consent is key right. [12:17] You don’t want to have. [12:18] Pretty checked boxes saying oh yeah, so of course I agree to share my info with you and please sell it to somebody else if you can you don’t want to bury things in terms of service and and accepting just overall. [12:31] terms and things like that [12:33] kind of the most important short form notice so just basically say you know either we’re at supported or you know we’re funded through advertising or [12:44] Marketing you know we measure. [12:46] The information you allow us to with other parties who made. [12:50] Bring your relevant messaging or advertising you know to learn the fine print and the details you can always click here, but that’s the just a bit. [12:59] I think timing is important as well. [13:01] You know at the nai we generally recommend having just in time notice if you’re going to. [13:07] disclose something to a consumer that [13:09] probably preconditions their choice to consent or not to the sharing of that data. [13:15] You should present the information to them. [13:17] at the time of the choice not [13:19] you know a month earlier. Not a month after but basically say, oh it looks you know when you get to whatever consumer interaction. You know might be relevant. [13:28] You know where? [13:30] They’re providing the conditions they think they may have where the symptoms they think they may have or whatever interaction. They’re having. [13:36] Presenting the information at that time. [13:39] I think is useful. [13:40] And lastly for for like the big three. [13:43] I would say symmetry of choices important if a consumer can opt in by [13:49] checking and non pre-checked box and then hitting submit [13:53] they shouldn’t need to mail you a certified letter to revoke that consent right it should be just as easy for them to to say you know what I decided against this now. I’m getting [14:03] you know I I opted this share my health status with someone and now I’m getting 10 mailings or 15 adds a day. [14:10] From a variety of companies. [14:12] I don’t want this anymore. [14:13] They shouldn’t have to jump through hoops and and should be able to opt out or revoke consent. Just as easily as as they provided it. [14:21] Melissa what about you with best practices? [14:23] I think [14:25] that in this and this is sort of a repeat of what Anthony said but maybe in it with a different spin is just [14:30] all of those things he said is important, but you have to tailor all like the where you go with timing where you go with user interface. [14:37] you have to tailor to the experience to your business, you know and how you’re [14:42] How individuals are experiencing that business whether it’s a platform or a website or whatever? [14:47] You know how their perspective and how they’re experiencing it is going to inform. [14:53] How you answer all of those? [14:55] questions that you might have like when should we raise the consent and how should we design the user interface and [15:02] how should we allow revocation or you know changing Minds and opting out? [15:07] It really does it’s super. [15:09] Business specific I would say and it’s super. [15:12] Individual specific as well like what kind of people are you? [15:16] addressing on this platform [15:18] What kind of information are you handling? [15:22] And you know what are their expectations going to be to the extent that you can. [15:26] Predict those around that all can inform. [15:30] when you raise a consent the timing the symmetry of choice and everything Anthony just talked about so [15:35] you know I think where there are general ideas around best practice you also have to be very. [15:42] patient slash individual in terms of [15:46] the kinds of individuals you are dealing with in that. [15:50] Circumstance in that business [15:52] and I have a question for you that it comes up a lot when I’m talking with different brand leaders and executives is this idea of being able to maintain Trust [16:01] With your target audience of consumers. How’s that work in terms of? [16:05] Personalization because I know that obviously you’ve been talking about the consent aspect, but then there’s the communication in terms of the value that this brings to consumers where does trust fall into this? [16:16] Yeah, I mean it’s [16:18] Huge, it’s it’s very important. I would say if if you don’t you know if you check all the boxes and you get the consent. [16:25] And you do it in transparent way and you meet all the regulations but you still people don’t trust you then it probably doesn’t matter. [16:34] Right, it’s not going to promote your brand or your business in the way that you want it to. [16:39] So, it’s hugely important and I think the way that you. [16:42] You get it and maintain. It is really doing all the things. I’ve said you know being very patient-centric in terms of like who are these people. How are they really? [16:51] Ingesting this information and I’m putting out there. [16:54] for them and then what I have found recently to be very successful is [16:59] making sure there are appropriate feedback Loops in place so [17:03] If you are putting consent out there. [17:06] Or your policies or what not? [17:08] Have a channel so people. Can you know maybe write into you or [17:13] Give feedback in some way. [17:15] So you can hear what they think about it. We have that in place. [17:19] at freesia, and it has been [17:21] a very important [17:23] part of our business to get that feedback and then decide [17:27] how to make changes based on that [17:29] as a stream of information coming in and I also think just the [17:34] existence of that feedback loop helps people especially when you’re able to [17:39] have a reel. [17:41] Back and forth with them and have a human voice on the end of that feedback. You know like we have an actual channel that people can write into our privacy team and get a real human response now. [17:52] That might not be scalable and all situations but I do think doing a little bit of that even if it’s a super heavy lift. [17:59] On our privacy team or a business. [18:02] Is well worth the effort because of the great gains you can make both in understanding what people are thinking and in just how far you can go with. [18:11] patience [18:12] I definitely agree with all of that. I think giving consumers agency and and the feedback loop is critical. [18:19] That’s certainly important and I think. [18:21] we’ll certainly [18:23] please [18:24] The the kind of the most privacy conscious consumers who are likely to to actively engage in in that kind of communication. [18:32] Beyond that I think probably goes without saying but having strong data security practices is key. [18:38] Most consumers aren’t going to trust the company that frequently announcing data breaches or data leakage or can’t imagine why? [18:50] So you know we’ve seen plenty of we’ve seen plenty of examples right of companies getting caught up and embarrassing kind of like just data losses and things like that. [18:59] But I think beyond that again. It’s it’s all about consumer expectations right, so if I’m just randomly you know. [19:06] I have some random symptoms that I’ve had the last few days and I look at up and go to a few and information websites to try to figure out. What could be causing it? [19:17] If that’s my only experience and then all of a sudden I start getting ads you know for treatments or trials or or what have you for that condition? [19:26] I’ll probably be a little distraught. I’ll be like oh wow. I guess someone you know collected that info and flagged me is potentially having this condition and now I’m going to bucket of consumers. Who might have this condition and [19:38] I’m getting ads whereas if it’s more of a personal choice. [19:43] and [19:44] I’m presented with an option right. We we see you know you’re reading up on this condition. [19:49] Would you like to receive more info you know ads or a third party offers or [19:54] You know marketing communications about this in the future. [19:58] Once I’ve been presented with that messaging and and clicked yes, it’s no longer a big mystery right like now when I get the ad I’m like oh okay. I just read about this last week and I said I I’d like to have more info. [20:09] Cool that I can see that actually working out in practice as opposed to. [20:14] How did that happen? [20:15] So, I think yeah meeting those expectations and setting the right expectations. [20:19] Can be crucial as well. [20:21] Well, Anthony and Melissa I’ve enjoyed having you both on the show here and we have one final question to wrap up with which and I’m going to throw out to Anthony first. [20:28] In terms of being able to offer any sort of parting advice. [20:31] to the life sciences brands and our audience in terms of being able to look for [20:36] you know these relationships with vendors as it relates to data privacy anything else that you would send along their way that just keep in the consideration. [20:43] Yeah, thanks. Jack and I might be a little biased here working for for Trade Association and self-regulatory group but [20:51] I would say you know maybe the first question is you know. [20:55] Is the vendor the company that you’re looking to to work with? [20:58] part of a trade group or a self-regulatory body right in other words [21:03] Are they being held accountable to to maintaining a certain set of standards is someone reviewing their practices? [21:11] As someone providing them with with best practice suggestions. [21:15] That are representative of the broader ecosystem right or or is this a company just kind of a lone wolf kind of working on its own without? [21:22] Sort of understanding what the current norms and expectations are in that ecosystem. [21:28] I think looking at contractual terms right, is is the vendor you know trying to maintain any rights to to your data that you might provide them with right or they acting purely as a service provider to. [21:41] Fulfill your goals and that’s it or they gonna try to you know make their own audience segments out of the consumers that you may have you know shared information about. [21:50] all of those things [21:51] and understanding the technology alright some tech is far more transparent than others you know in terms of the identifiers that are used the addressability methods. [22:02] How visible it is or how not visible it is what restrictions might be tied to that. [22:08] Does the technology potentially violate? [22:12] Like mobile platform in terms of service right is under. [22:16] IOS and Android terms, you know was is the company of an allowed to share collect this kind of data. [22:22] I think those are all sort of key processes, but I would say the most important one to the extent that. [22:28] There’s a an applicable accountability program. [22:31] Having a company essentially be vetted by somebody else and having a set of experts do your due diligence for you or at least assist you with your due diligence. I think is always a good choice. [22:42] I would just add on to that that. [22:45] What we’ve talked about this whole time is? [22:48] Are the same questions I think that that should be asked a vendors of you know like how do you take a patient-centric approach to privacy? [22:56] And then understanding how that specifically tailored. [22:59] to the vendor right into their situation like I work for a vendor that’s [23:03] pretty [23:03] unique in terms of like the platform that we have how we obtain data. [23:08] and [23:09] while we have to [23:10] adhere to all of the same regulations. [23:12] As everybody else or those that are relevant. [23:15] We might do it in a in a slightly different way because of the way that we. [23:19] Engage with individuals so it’s really important for the life sciences brands that we work with to understand that. [23:26] So they can ask the right questions about how we’re talking to our patients. [23:30] How we’re giving the right notices how we are being transparent? [23:33] How we’re getting feedback from them? Hopefully and how we’re changing and evolving as [23:38] not just laws of all, but you know how we stay up to date with all of that and also how we are changing and evolving based on feedback from all of our partners. [23:48] individuals [23:49] are other life sciences brands and and any other kind of partner that we might have. [23:54] Because I think that’s really important in this dynamic space that we’re in is the ability to be flexible. [24:00] and to be [24:01] ever evolving because I mean as we can see that’s how it’s going to go and I think that we’re going to just see more and more. [24:08] guidance [24:09] regulations [24:11] best practices and expectations on the part of [24:14] individuals which is a good thing like I think we all want that so. [24:18] that’s what I would ask for in a partner is just [24:21] I would want to try to find out if they were. [24:24] They were ready for all of that. [24:26] Awesome well so a lot of considerations for our audience to keep in mind and I appreciate you both Anthony and Melissa coming on here and be able to offer those insights and those those key action items hopefully those in our audience can take those and bring them back to their organisation and set their own best practices. [24:40] Thanks for having me always a pleasure. [24:42] Yeah, thanks for having me.