Medical information — a patient’s experience of calling Medical Information now and her vision for the future

Pharma companies often discuss what patients want. 

And, while patients often contact Medical Information teams, the teams are challenged to provide information that is relevant to the patienta but still in line with the regulations.
Recently at a conference, a company representative was talking about providing Medical Information letters to patients. In an audience survey most participants said, yes, we are writing letters for patients. When asked how many of them involved patients in designing those letters? Not a single hand went up.
To find out what patients want from pharmaceutical companies Medical Information teams I interviewed Suz Schradt, Director of Patient-Engagement at the Arthritis Foundation and a long-term advocate for patient engagement. 

Today I am sharing with you Suz’ experience of a Medinfo Service and what her vision is for the type of information she would like to be able to access one day in the future.

Since being diagnosed with a rheumatic disease as a teenager, Suz Schrandt, Director of Patient Engagement for the Arthritis Foundation, has been passionate about ensuring that patients’ lived experience, and unique knowledge about living with a disease is taken into account at all levels when healthcare decisions are made in research, development, clinical trial design and beyond.

I interviewed Suz to find out what her experience is with medical information teams.

Suz also told me what pharma companies could do better than any other stakeholder in the healthcare setting. 

Isabelle: Where do you see pharma’s role in providing product-specific information to patients versus the role of patient groups, or dedicated physicians?

Suz: Well, as patient groups we are not licensed to provide product-specific info. We can provide only generalized data. While a doctor would be permitted to provide product-specific information to patients, an individual doctor, will not necessarily know the latest and greatest information on individual pharmaceutical products. 

All things considered, as the developer of the product, the pharmaceutical company is generally in the best position to provide product information.

It would be amazing, for example, if they could provide information on interactions with other drugs. If that data were available we patients would love to have it.

Isabelle: What challenges do you see with pharmaceutical companies providing information on products?

Suz: In the US companies can talk to patients in the development phase. However, how companies can interact with patients, once the drug is developed and being marketed, is tightly regulated and so it can be very tricky to get answers to the truly relevant questions, that only a company really has data on. We have similar challenges in the device space. 

If you think about it, it’s strange that I know more about my coffee maker, a Keurig, than I do about the joint replacements in my body. Because my coffee maker came with a manual.

It’s strange to think, for example, that if there was a product recall on an implant I have, I wouldn’t know about it and would have no easy way of getting that information.

For this reason, many patients are advocates for universal Unique Device Identifiers. 

Despite everything, however, the FDA is making amazing headway in the space of patient engagement across a variety of fronts. I serve on the inaugural FDA Patient Engagement Advisory Committee that is exploring even more ways to bring the patient voice front and center to device and drug development and evaluating how to address access of information provided to patients for devices. 

Isabelle: Have you ever contacted a Medical Information Service to get information on a medication you are taking?

Suz: Yes, and it was not a good experience. I understand they cannot give me specific information on how the drug will work as I have multiple comorbidities. But, why can a Medical Information Department not tell me what worked in clinical trials?

Why can I not call the company and ask for aggregated data on what is publicly available and for information on what side effects that most people saw?

It’s a difficult area, but if I had access to this type of information, it would make me feel so much better. 

Isabelle: Would you be willing to share your experience? 

Suz: Yes. I was on a panel at the DIA. We were all sharing our experience of calling the companies to test them on drug inquiries. I was doing self-injectable drugs. Although they make the injectors really easy to use I accidentally gave myself an intra-muscular shot, instead of a subcutaneous shot This resulted in a large bruise. So I called the company. 

All I wanted to know was will the drug dispense in the same way, will it metabolize in the same way? That was my question. I was unable to get any response to my question. The Medical Information person from the company would not, and presumably was not allowed to, answer the question. 

The only thing the company representative kept saying over and over was that this is an AE. Finally, I received an entire booklet of information about AEs, but I didn’t get a response to the question I was asking. That was very frustrating.

Isabelle: What could have made that experience better for you, taking into account the inability of the company representative to respond to your question.

Suz: I got the impression that the company representative was following a protocol and felt that she was unable to tell me anything other than inquiring about a potential Adverse Event. I felt as though her main concern was legal more than medical.

So, even if she couldn’t give me information, If she had just been able to talk to me like a person with a medical concern, rather than “someone with an AE” that would have helped.

Isabelle: At a recent conference, a patient advocate said, she has an issue with non-patient advocate individuals addressing the audience with the words “we are all patients here”. What are your thoughts?

Suz: What I would say is this, I think we are all consumers of healthcare. However, some of us are patients because we have chronic diseases or we have had an acute situation and were in the hospital for a long amount of time. You may also fall under the “patient” category because you are a parent or caregiver of someone who has experienced an illness or injury. I think you can really only call yourself a patient if you are a caregiver, and are thus experienced with the patient experience, or else you have been a patient yourself and have had a long experience of what that means. Saying “we are all patients” implies that a healthy person who had strep throat “once a few years ago” is the same as a person with 3 chronic diseases and significant QOL implications and to me that isn’t accurate.

Isabelle: I find that really interesting. I have always said “everyone in this room is a patient” because I have never liked the perception of people working in healthcare viewing themselves as distinct from “the patients”. Especially when we speak about patient compliance, or generating content for patients. For this reason, I have always highlighted that anyone can be a patient.

Suz: Yes, I never thought about it from that perspective. Where I work, I am focused on getting patients involved in developing new drugs. We focus on identifying patients to work in our group to help develop clinical trials.

So from my perspective, only individuals, who have truly experienced the condition that will be explored in the clinical trial, would qualify as a patient.

Isabelle: And finally, what do you think about how patients are portrayed in adverts. What are your thoughts?

Suz: Well, I am sure they do all sorts of consumer focus groups. There is a reason they do the commercials the way they do. I can only say sometimes the commercials portray someone who is responding to therapy as a 100% functional person—maybe even running or doing other strenuous activity. 

When I’m deliberating a switch it is for a much more base level of function—I’m just looking to be able to button and zip.

The great news is, for many patients that higher level of activity can be a treatment target! There are just many of us for whom the goals are different.