January 16, 2020
Trishna: Oh, okay. So yeah, my name is Trishna Bharadia And I’m a patient advocate and a patient engagement champion. So I basically I work to get the patient voice heard louder, stronger, more effectively throughout the entire healthcare journey.
Trishna: Whether that’s through collaboration with industry, through collaboration with clinicians, patient organizations, individuals who are living with chronic illness or serious diseases. And it’s about basically getting all the stakeholders together, working in a collaborative way to make sure that the patient voice is being heard better.
Intro: This is the Darshan Talks podcast, regulatory guy, irregular podcast with host Darshan Kulkarni. You can find the show on Twitter @DarshanTalks or the shows website at darshantalks.com.
Darshan: Which really raises the important question of if you want to get the patient’s voice heard better, you want to make sure that patients are in the room. And one of the big conversations that we’ve had is how has become more and more important over time to ensure that the patients are in the room.
Darshan: But Trishna you and I have had this conversation before and I know we’ve had conversations with other people, what patients are feeling like you’re giving me the… You’re telling me that you want to hear my voice, but you’re making it difficult for me to appear and show up and sort of give my voice.
Darshan: So what I’d like to do today for today’s talk, is talk a little bit about how PhRMA and the life sciences industry and health in general, maybe needs to better work with patients to enable them to be able to give and position their voice. Does that question make sense? Does that scenario make sense?
Trishna: Yes. No, definitely because it’s actually something which I don’t think at the moment industry is getting completely right. There might be a willingness to engage with patients, but in order to do that effectively and to be able to engage patients and what I would say an appropriate manner, I think there is a long way to go and a lot of it is to do with basically being considerate to patient needs to patient requirements.
Trishna: I often say when I’m working with industry, I often say to people, ask me what will make it easier and what will facilitate me to be able to participate in this particular project? Because, so this is the other thing, there’s no blanket one size fits all when it comes to patient engagement.
Trishna: Every single patient, whether they have a specific disease or whether it’s patients within a specific disease area, they all have different requirements and being able to meet those requirements will enable patients to more effectively give their input.
Trishna: So, I think industry in general needs to look at the way that they’re engaging with patients and make sure it’s more appropriate to each individual depending on obviously exactly what they’re asking them to do.
Darshan: So obviously that sounds great in general but are there some specifics that you would say advocates more than others, if you will?
Trishna: Yeah, so some of the specifics would include things like, I’m talking about very, very practical things. So for example don’t hand patients a document that is really long and complex, which outlines what their engagement is going to be. If it’s a legal document, make sure that it’s as simple as possible because actually if a patient doesn’t understand what they’re going to be doing, then it’s A, not very transparent, but B, it might put them off.
Trishna: They’re handed this legal document and they think they’re signing away their life might actually put them off. Things like, I mean a really good example when it comes to clinical trial recruitment, I recently, I, a friend of mine sent me two patient information leaflets and inform consent forms for clinical trials that they had been offered to potentially participate in.
Trishna: This person lives with inflammatory bowel disease and they had been asked to potentially participate in clinical trials in order to basically as part of their treatment and their care path. And each of those documents was more than 30 pages long. It wasn’t impatient friendly language.
Trishna: Now I’m someone who has a high level of health literacy, a high level of general literacy. And I know a lot about the medical research process. After about six or seven pages, I was losing the will to live. I got to the end of the documents, I was none the wiser as to what exactly these studies involve, what the commitment was, what the risks were.
Trishna: And I thought, well, if that’s coming from an experienced patient advocate, your average Joe blogs who may not have a high level of literacy, who doesn’t know much about the medical research process, what hope do they have? And again that kind of thing can be very overwhelming. It can put people off from participating.
Trishna: So there’s that obviously with documentation and then some of the practicalities, look at the timings and the logistics. If you’re holding an advisory board or a focus group, think about where you’re holding it, what time you’re holding it, if for example, it’s in the middle of a big city, so I’ll take London as an example.
Trishna: Central London, don’t expect patients to be traveling in the middle of rush hour for example. People have mobility issues or just they may have to leave home very early in the morning and that might not be possible for some people with chronic illness. For me, my symptoms are worse in the morning, so it’s very difficult to manage my symptoms in the morning.
Trishna: So if you ask me to attend a focus group at nine o’clock in the morning in Central London, actually that’s not something that I could do potentially of the overnight accommodation if that’s the case. Then other things, if it’s a meeting or some kind of a project which involves foreign travel and somebody has to travel with a carer, A, make it easy for them to do so, but some of the things which can do that include doing the airline booking under a single reservation.
Trishna: Because if you do that then A, you’re more likely to be seated together. But if you’re not, it actually makes it much easier for the person to call the airline up and say, “I have specific needs. I will be traveling with a carer can you please ensure that we’re seated together.”
Trishna: Now if you have different booking references, often they’re not able to change the seating for that other person unless that person is present. If you’re the same booking reference, yes they can do that. It also gives the person, the patient, it gives them control of the booking, which again is much more difficult if the bookings have been done separately.
Trishna: I had an incident, actually just a few weeks ago where the bookings have been done separately and when I went to check, I called up the airline because when I was sent the seating arrangements, myself and my carer were sat about 12 rows apart. So I called up the airline and I said, “Look, can you please make sure that we’re seated together?”
Trishna: They assured me that yes, it had been done, but then when I went to check in, by the time obviously the day before the flight, it hadn’t been done and because of booking references were separate, bookings had been done separately. Basically it ended up being a huge palava just in order to get us seated together actually that could have been avoided.
Trishna: So things like that can really help because at the end of the day, you don’t want a patient having to spend extra time sorting out these logistical things, which could be made easier by simple things as I can say booking the travel at the outset.
Trishna: Don’t ask people to book train tickets and then ask for reimbursement afterwards. Single bookings on airplanes, meals if you can provide, for example, a certain amount which is chargeable to the hotel room, that will save patients from having to pay for meals and then get reimbursement afterwards.
Trishna: All of these things take time, energy, and effort and that’s often energy and effort and time that patients don’t have. So it can obviously make things easier and make the whole experience a patient engagement much better, which will then have an impact on somebody then saying for the next project, “Oh, actually that was a really great experience. Yes, I’ll do it again.”
Darshan: Right. This was amazing. Thank you so much. What I’d love to do, Trishna, is invite you for another talk and could we continue them?
Trishna: Yes, [inaudible 00:09:32].
Darshan: Great. Thank you.
Trishna: This is the Darshan Talks podcast, regulatory guy, irregular podcast with host Darshan Kulkarni. You can find the show on Twitter @DarshanTalks or the show’s website at darshantalks.com.