Increasingly pharmaceutical companies and medical publishers are drawing on the valuable insights and first-hand experiences of patient advocates when developing therapies and reporting medical research. Following his presentation at the 2023 Annual Meeting of the International Society for Medical Publication Professionals (ISMPP), The Publication Plan spoke with Patrick Gee, a patient advocate who is passionate about striving to achieve equitable healthcare access. Patrick describes his background as a patient with diabetic kidney disease and talks about his continuing mission to spread hope to others though his role as a patient advocate. Patrick is the Founder of iAdvocate and is also an Ordained Minister.
Could you tell us a bit about your background? Did any specific experiences of being a patient with diabetic kidney disease prompt your decision to become a patient advocate?
“My background is in justice, law and criminology. In 2003, whilst I was at work, I was feeling a bit sluggish and it was recommended that I go to the emergency room after the nurse took my glucose level and it was 758 mg/dL. In the emergency room they performed a blood test, the A1C, which was 11.7%, and it was then that I was diagnosed with having type 2 diabetes and was referred to an endocrinologist. Then 10 years later, in April 2013, during a routine doctor’s appointment, I was told that I was currently at stage 3b of end stage renal disease and I hadn’t a clue what that meant. In the ten years during which I had been treated for diabetes, I had never been told that the condition was the leading cause of kidney disease, so to hear that I was at stage 3b, when I didn’t know anything about any stages really caught me off guard. I was also told that my kidney function was between 30 to 35%, and again I didn’t know anything about the functionality of a kidney. So I was dumbfounded, I didn’t know how to interpret what I was being told, and I certainly didn’t know how to go home and explain it to my family. I was referred to a nephrologist, who told me that I would eventually need dialysis and would go into kidney failure, but at that time I just needed to abstain from chocolate, nuts and dairy products to slow down the progression. I had gained around 150 pounds in weight because my kidney function was declining kind of fast and I wasn’t able to pass all of the toxins out of my body, so on December 1st, 2013, I underwent my very first exchange of peritoneal dialysis. After being told that I had lost my kidney function due to diabetes, my main reason for wanting to be an advocate was to be able to go out into the community and to be able to talk about health literacy because I had no information prior to my diagnosis. I wanted to target at-risk communities and rural communities who hadn’t been given any medical information on particular disease states. So my advocacy kind of launched from my diagnosis and that’s where I have been ever since.”
“My main reason for wanting to be an advocate was to be able to go out into the community and to be able to talk about health literacy because I had no information prior to my diagnosis”
At the 2023 ISMPP Annual Meeting you referred to your work as a BMJ patient partner. Could you describe what this role involves in terms of authorship and peer review? How are BMJ and other publishers driving advances with this type of initiative?
“In 2018 I was asked to participate in an international study about different therapies and drug innovations pertaining to the management of type 2 diabetes. I believe I was one of five patients out of maybe 15 people on this particular committee and we were looking at all of the different research on sodium-glucose cotransporter-2 (SGLT2) inhibitors and glucagon-like peptide-1 (GLP1) agonists, and even some other medications like metformin. We were really giving a patient perspective based on how the research was explained and what we thought would benefit us not only individually but as a collective. That particular process with BMJ was great because I knew the prominence of the BMJ and was excited to be able to participate in such a great publication. They couldn’t offer an honorarium but could make me a co-author and to me that was like somebody going to the Oscars and winning the award for supporting actor. To me co-authorship was better than money because of the prominence. Throughout the process we were not seen as weak, afflicted or even subservient, but we were actually made to feel like partners, like equals, so all of us had an equal say and there was even more emphasis on what we had to say. If we didn’t understand anything, the study team would stop and take their time to explain it, so it was really a great opportunity. It was at that point that I really learned to appreciate how the patients’ perspective can go towards helping industry, medical providers, scientists, and clinical trialists in understanding certain product developments or particular therapies.”
Why is it so important for pharma companies and medical publishers to involve patients when reporting medical research? What are the main barriers to patient involvement in this area and how can these be overcome?
“In my personal and professional opinion, I believe that the reason that pharma companies should include patients is because we are the end users. We can share our lived experiences and describe how some of these therapies and technologies actually work, some of the pros and the cons, the benefits and some of the things that really need to be worked on, such as side effects. We know there is no such thing as the perfect therapy but as patients or end users we can tolerate certain things when we can better understand them. As patients partnering with pharmaceutical companies, we can share our lived experiences but maybe some of our gifts and talents in other areas can add to the design of the technologies. We are also able to go back out into the communities to explain medical research, help clinicians, community health workers and even educate those that may be in the same disease state to better understand how pharmaceuticals work. We can help break down the barriers when it comes to ensuring that clinical trial partnership or recruitment is more diverse and inclusive to everyone. One of the biggest barriers is fear, and that’s on both sides. From the pharmaceutical companies there is the fear of not knowing how to talk to their consumers in a manner that doesn’t suggest they are trying to recruit them. I know the pharmaceutical companies that I work with are now very community minded. They know that in order to be able to engage the public they have to literally become a part of the community – they take the time to understand the needs of the communities, the needs of those who will use their therapies. They understand that it is more than just the therapies that need to be considered, but how a person lives, the affordability of the therapies, whether the patient has insurance and if they don’t have insurance how pharmaceutical companies can work with insurers to ensure the patient has access to the product. From the patient standpoint, because of a lack of diversity when it comes to clinical trials you have conspiracy theorists that always want to put things out there and they scare the public. Right now I believe with patient ambassadors, professional patients and advocates being able to go out and knock down those barriers, we can better help people to understand that working with pharmaceutical companies will not only help them but will also help their family at some point, down the generations, to be able to receive better medications, better treatment, better healthcare outcomes and overall better quality of life.”
“Pharma companies should include patients because we are the end users and we can share our lived experiences”
Plain language summaries (PLS) are recommended in the latest Good Publication Practice guidelines. How important do you think these are in disseminating medical research to patients? Are there any other formats that you think should be more widely used to ensure that patients are able to access the information they need?
“It wasn’t until I went to the ISMPP annual meeting that I really understood PLS even though I had written articles. Even the journals I wrote for never really explained them to me. Sometimes when journals ask for a patient perspective, they actually want patients to write in medical terminology that they are not familiar with. When PLS were explained to me a light bulb went off, because as a patient advocate I don’t understand all of the medical terminology and jargon as a lot of these things are complex, but when you put them in plain language, they are so much easier to read, to articulate, and understand, which allows dialogue with other non-healthcare professionals. PLS allow topics to be discussed with communities, who can share their opinions, which can then be taken back to healthcare workers and those in the industry. I really wish internationally that everyone would utilise this concept ─ I know that is a hard thing for people to do, but the annual meeting really opened my eyes. As a first-time attendee and as a patient, I was able to understand an entire conference without having to nudge a doctor to ask them to explain what was being presented. I felt that I was valued ─ they knew I wasn’t a physician, they knew that I was a patient, but they valued me enough to simplify information in a manner, which meant that the integrity was not lost, but everybody in the room understood the message, the need, and how we could all collaborate in this particular venture.”
“a lot of these things are complex, but when you put them in plain language, they are so much easier to read, to articulate, and to understand, which allows dialogue with other non-healthcare professionals”
You have a background in law, another area in which a lot of jargon is used and precise use of language is important. Does your expertise and experience in that area resonate with thinking about PLS in medical communications?
“After the ISMPP meeting, I was sitting on one particular advisory board and we were told we needed to write a white paper. I brought up PLS but got a lot of push back, so I said, OK, everybody in here has a medical degree but I’m the only one here with a law degree. I started throwing out law jargon and asked if they understood what I was saying. They asked how that was relevant, which illustrated my point. I was there as a partner, as an ambassador but they wouldn’t simplify the information. If they asked me to break down the legal jargon and explain it to them, I would be more than happy to do so. I said if you really want to understand how to break down that barrier of patient-physician or patient-provider communication, its plain language. I don’t know why for some people plain language is a curse word, perhaps those in academia have got so prestigious that they just don’t know how to communicate with the lay person. This also goes back to how you can better understand the patients that you care for ─ PLS meet us where we are, especially if we are trying to understand how to manage our disease state. In health literacy, we are using plain language when going into communities to explain about diabetes, kidney disease, or cancer so why can’t it be used in medical publications? That would be my question.”
When and how do you think it would be appropriate to use social media to share medical research with patients?
“Researchers and those trying to recruit for clinical trials or talking about medical innovations often use social media. In some aspects social media can be very good because it allows the public to stay abreast of new innovations and new technologies. The risk comes when you are dealing with negative comments as people often don’t know the difference between destructive and constructive criticism. I think the wording used is important ─ how will you get the biggest bang for your buck. You need to take the time to explain what it is you’re trying to do and understand that with social media you only have a limited amount of space to be able to talk in depth. A link or a QR code could be used to allow people to look into things further. I think in the age of social media, it has been really good at getting information out there, and allowing people to be reached who might not have known about but may be very interested in what you are posting. It allows them to access news and allows the news to be shared within communities and network so everyone can benefit from it.”
“social media can be very good because it allows the public to stay abreast of new innovations and new technologies. The risk comes when you are dealing with negative comments”
You have talked about the need to ensure that everyone receives equitable treatment, and use the motto “I am the Voice of the Voiceless and Face of the Faceless in the fight against kidney disease.” What are the main issues you have encountered in terms of inequity within healthcare?
“When we talk about health equity there are a lot of things that are left out. Normally when people talk about health equity they are thinking about race or ethnicity. We know that race is not biological but a social construct, and when you look at ethnic minoritised groups, they are often left out due to systemic issues, not only in the United States but all over the world. What we fail to include when thinking about health equity is people over the age of 65 years, people living with disabilities, and people from the LGBTQ+ communities. Society seems to pick on women even though there are more women in this world than men. Yet women tend to be lumped into a minoritised group and there is a lack of balance and equality when it comes to the treatment of women. When you think about gender and other issues, there is a big void in the medical community for equal treatment and access to clinical trials, access to health literacy and access to a better quality of life, and these are the things that I’m very vocal and passionate about. I like to refer to the Universal Declaration of Human Rights, written by the United Nations in December 1948, which includes 30 articles outlining basic rights for human beings. We want to talk race and there is only one race and that’s the human race. If we can get back to that and just talk about human beings and understand that all human beings need to have a seat at the table, need to be treated equally, need to have access to medical innovations, drug development, and biologics, and need to have better care, especially those who are seniors or elders. Even when you look at our children there is a lack of diversity in paediatric care, especially if you look at the mortality rates in maternal health. So there are a number of things that I am very passionate about. If we could just treat people as human beings and stop looking at their exterior but instead look at their heart and the need to serve each other, I think we could certainly eradicate a lot of the current problems within the healthcare system.”
“all human beings need to have a seat at the table, need to be treated equally, need to have access to medical innovations, drug development, and biologics, and need to have better care”
You gave the 2023 ISMPP Annual Meeting your ‘award’ for the most inspiring or transformative patient partnership initiative. What can ISMPP and the wider medical communications industry do to improve equity and inclusivity?
“I think outside the United States they are doing an excellent job, especially with patient engagement. In the United States I think maybe there is an issue of not being widely known among patient groups. My advocacy isn’t just in kidney disease, it also covers diabetes and heart disease. I’ve not heard about ISMPP through the different societies that I work in when it comes to publications, and I had never heard of them before they reached out ahead of the annual meeting. Once I had been invited to the annual meeting I wanted to start letting people know about ISMPP, and the more patients that I’ve told, the broader the outreach has been. As patients, we are very limited in who invites us to be able to share our perspectives, but now I feel that if I am not listened to, I will reach out to this organisation that has ties around the world – if people don’t want to hear what I’ve got to say locally in the United States, then I will go and share my perspectives with like-minded people in other countries and we can come together as one. I think ISMPP could gain a bigger audience if it was to become more present and more vocal among patient groups in the United States. I guarantee that more patients will jump on board to share their perspectives, because I’ve discussed ISMPP with some of my peers they are excited and want to learn more.”
Which of the activities that you have been involved with as a patient advocate have you found the most rewarding and why?
“One of my activities that I find very rewarding is being a minister. If you look at the definition of minister from Hebrew and Greek, it means to serve. I love going into the community, meeting people where they are, whether they are in a dialysis centre, in the emergency room, a hospital room, a nursing home, a coffee shop, wherever they are, even in church sometimes, I meet people where they are. I’m a very good listener so I listen to what people say but I also pay attention to what they don’t say. When it comes to health literacy, I explain that I’m not a physician but because I work in a number of organisations and committees I can get information, not just in this country but from researchers around the world to help patients make better decisions when they go to the doctor – they can talk about the research and ask how a certain therapy can help them. I consider myself a hope dealer – I deal hope, and in dealing hope I get to understand things from communities and take that back to industry. That’s probably the most rewarding part of my advocacy, meeting people where they are and being with them in that moment and staying with them until they recover or they feel they can manage – for me that’s the most rewarding thing about what I do.”
Finally, what advice would you give to any patients who are interested in acting as a patient advocate or collaborating with medical publishers or pharma companies?
“The first thing I would say is understand your particular medical journey and understand that your medical journey is totally different to what someone else is going through, even though it may be in the same disease state. Understand that your story is important and how you are able to convey that is very important, especially when you talk to people in the medical industry. I would also tell those that are interested in becoming advocates, to make sure that they pick a particular path. Some people are more diverse in crossing over into different areas, whereas some people just want to stay focused in one particular area. It’s important to understand that in our advocacy, we can’t be selfish – my work is not about me, it’s about those who are suffering like me or suffering more than me. Being an advocate is not about being selfish it’s about fighting for justice and you have to know which justice you want to fight for. For me, as I stated, I’m fighting to remove all of the racial and social, even cultural barriers, so human beings can just be human beings – living, breathing human beings who may be going through certain trials or tribulations or afflictions and who need care, love and somebody there to support them. That’s what I would tell new and up and coming patient advocates.”
Patrick Gee is Founder of iAdvocate and can be contacted via email@example.com or LinkedIn.