Paul Kidwell

Paul Kidwell

Paul Kidwell is an independent public relations/patient advocacy consultant and podcast producer working in the life science industry. He has been part of Medable’s Patient Advisory Council since early 2020.

Recent posts by Paul Kidwell

2 min read

Wither the Caregiver. Pharma and Healthcare’s new Best Friend.

By Paul Kidwell on Feb 4, 2021 3:57:41 PM

You will never recognize them by sight or outward appearances. They come in all shapes, sizes, genders, ethnicities, and ages. Spotting them in a crowd is also challenging, as they are typically more comfortable on the periphery of activities, preferring to speak “only when spoken to” or when something is worth sharing. 

They are equal parts loving partner, master planner, keeper of schedules, proactive listener, quick study on all things medical, thorn in the side of the biopharmaceutical industry, sometimes loudest voice in the room, and madly in love with the person they support. Which, above all else, is why they are comfortable in this role, the role of a caregiver. When asked why an individual becomes a caregiver to a spouse, child, partner or loved one, they will tell you simply; “it wasn’t my choice, but it starts with love.”

Every caregiver is born in a different way. When I was thrust into a caregiver role nearly 15 years ago, I was your typical “babe” in the woods. Nobody expects to get sick until they do. For caregivers, this sentiment is exactly the same. The role and its inherent demands are never part of a person’s thinking. As in, “well, when I become a caregiver I will know exactly what to do because I have been preparing for it all my life.” One day you’re not a caregiver and the next day you are. More importantly, you're often a caregiver to those who are most important to you. In my case, I was a caregiver for my wife, on whose face the sun rises and falls. Perhaps more frighteningly, I was a caregiver facing tasks I had no experience with. 

This is particularly true when someone like myself accompanies my care partner to a physician appointment, or a meeting with a team to discuss potential involvement in a clinical trial. While doctors meet with patients on a regular basis, it becomes quite clear during initial engagements that pharma and the supporting healthcare ecosystem have minimal exposure to caregivers. To their credit, the industry has done yeoman's work during the last decade in ensuring that patients are at the heart of any drug development and/or clinical process. However, missing in this equation – and I really mean totally absent – is the lack of consideration to or involvement with caregivers.  If it is a patient perspective in which these professionals are interested, they would do well to look at the other person in the room and tap into this huge reservoir of information. Real-world data that’s gathered within close proximity of the person for whom they care, and includes medical, personal, and all-important anecdotal information. Information that can be used when developing drugs, trial protocols, clinical wearables, marketing campaigns and the like.

Caregivers and biopharma share the same goal. The optimum health and improved outcomes of the patient. And yet, there is little evidence that they ever talk to one another. Furthermore, when information is presented, usually by the biopharma professional, it comes from a lofty peak of complex medical data and rarely understood by the non-scientist caregiver. When I am immersed in this type of conversation I usually quote a line from one of my favorite movies, Margin Call, whose main character says; “Explain it to me as you would to a small child or Golden Retriever.”

So, what’s the main takeaway here? It’s simple. Caregivers are interested in partnering with medical professionals across the continuum. They also recognize that the information they have to share with biopharma researchers may just be the missing secret weapon from R&D arsenals. Imagine incorporating data on how medicines are used, and their effectiveness (or lack thereof) during all phases of drug development and approval. But that's not all, we also provide value with trial recruitment, patient engagement and retention, and any number of ancillary pieces of data that will help improve the patient journey.

How do you gain access to all of this?

Well, all they need to do is ask.

5 min read

At Medable’s PAC, Patient Advocacy is Personal

By Paul Kidwell on Jan 26, 2021 10:34:17 AM

The Patient Advisory Council (PAC) at Medable consists of a small group of experienced professionals who work within the life science industry in various capacities. This includes biomedical research, communications, caregiving, patient advocacy and patient engagement. This growing group of nearly 10 individuals, Richie Kahn, Jennifer McNary, Gaurav Dave, Sumaira Ahmed, Allison Kalloo, Joan Venticinque, Paul Kidwell and Jena Daniels help Medable bring a patient perspective to the many technology-based programs in which the company is involved as they strive to decentralize the clinical trial experience for patients.   

 The high percentage of available patients who are not participating in ongoing clinical trials is staggering and continues to grow exponentially despite the ongoing efforts of an extremely interested biopharmaceutical industry who is willing to present an array of experimental therapeutics across all disease areas with the potential to address serious unmet medical needs. It’s Medable’s goal to create technical applications and platforms for patients that will allow and encourage them to more readily engage in clinical studies and gain access to these novel medicines by making the process easier and less daunting. 

Many times, people who engage professionally within the realm of patient advocacy have a personal backstory or a professional connection as part of their motivation for involvement. Whether a patient advocate, caregiver, researcher or an affiliated role within the life science industry, it is not unusual for these individuals to bring their particular story to this crucial role. This is true with members of Medable’s PAC, whose diverse professional backgrounds add to the integrated capabilities they offer individually. To have an industry perspective as a scientific researcher or industry communications or patient engagement professional provides Medable with an impressive array of talents and knowledge to benefit patients and company collaborators. 

Chief among them is Richie Kahn; a PAC member and medical researcher who taps into his professional repertoire when asked to offer his unique take on a Medable project. Researchers are at the heart of any biopharmaceutical company and the data they are able to provide and the ability to view the patient experience through a lens that was borne out of years of time and experience spent in a research lab cannot not be underestimated. Medable clearly understands this notion, ensuring that company leaders and/or employees who have scientific research are a central part of who is hired. This also extends to the PAC where research is represented in the person of Richie Kahn.

“I bring my experience as a clinical researcher to bear in each PAC engagement and each engagement outside of the PAC,” said Kahn. Where I am working to engage the patient perspective. I have a pretty good understanding of how studies are designed; how industry recruits patients and some of the methodologies used that don't bear a lot of fruit. Even receiving pushback that is likely to be received when we suggest to them reviewing patient-friendly methodologies.``  

As important as research is to understanding the patient journey, there is no substitute for the experience of an actual patient or the input from a patient’s caregiver. This first-hand, real-world exposure presents the most unique viewpoint imaginable, and any information provided by individuals who occupy these categories has added immeasurable value to biopharma companies developing therapeutics. Particularly when considering issues impacting clinical trials where patient involvement is anything but robust and there is a concerted effort to attract, recruit and retain qualified individuals across the entire disease landscape. A fact underscored by two-time cancer patient and survivor – and PAC member – Joan Venticinque.

“One of the biggest barriers to trials is access. You have to take them to where the patients are, to their doctors; their trusted communities. Not only to academic institutions where access is limited. You have to ask patients what is important to them; whether the potential outcome of the trial is relevant to them. You have to start in the beginning and get patients involved on the study team. They cannot be an afterthought.”

When a patient goes through their disease journey which often does include engaging in a clinical trial an active and involved caregiver is with them every step of the way. Besides a patient’s medial team, the care partner is the most important person involved. They don’t experience the disease physically, but a caregiver lives as the patient does and feels the emotional ups and downs of an illness, plus is equal parts counselor, homemaker, chauffer, advisor, and quasi-expert on all issues impacting their loved one. Medable’s PAC has the good fortune of Jenn McNary’s involvement. Jenn brings her experience as a life science industry and rare disease patient advocacy consultant to PAC. More importantly, is her lifelong involvement as a Mother of two sons who have Duchenne Muscular Dystrophy and another son who lives with Primary Immune Deficiency. Jenn lives and breathes the patient experience and brings a unique understanding to her advisory role.

“I know what a burden clinical trials and healthcare can be to families. So, I think my biggest contribution to the group – and Medable clients – is to make everything that we do a bit more friendly to the patient.  When working on the Access app we knew we wanted to attract as many people as possible to participate in the study. In order to accomplish that, we knew that we had to make it easy and understandable; and to design a website that really appealed to patients. And so we were able to create tag lines that helped reach patients. I think it’s important to remember that there are a lot of people pulling patients in a lot of different directions, and especially when you are talking about non-interventional, observational studies where compliance is a real issue. We have to make the process less burdensome and worthwhile, and if patients get frustrated, they will end up not participating.”

Supporting Jenn’s contribution as a caregiver is her Boston colleague and fellow caregiver, Paul Kidwell, who brings over 13 years of caregiving experience and two decades worth of involvement as a biopharmaceutical industry communications professional and story creator to the PAC.

 “The caregiver is the silent voice of the life science industry. Much like in companies who took the time to learn from patients and what they could offer, and the information they could provide to help with clinical trials, the same is now true for interaction with care partners. We are the closest person there is to the patient and the same information and experiences the patients are living through; we also live through.” 

Within the context of all groups there is the need to have someone act as the “connective tissue” between members, the company and their clients. For the PAC, the “straw that stirs the drink” is Jena Daniels, a trained research scientist currently who holds the position of Medable’s Director of Research and serves as company Advisor to PAC. In her role she directs the administration, client/patient engagement, content development and all ancillary PAC programs and forges the link between Medable and PAC. All with the intent of “amplifying the patient voice.”

“For patients, understanding that only having a seat at the table, is no longer enough. In a past position, I served as Clinical Research Manager for kiddos with autism and some of my favorite moments were being that connective tissue and advocating for the families while they are participating in our trials, and then sharing that information with our trial team. I recognized how excited I was within that advocacy component and working for a company that believes in patient centricity and the importance of having that patient voice and bringing in that perspective of the DNA of what we do.” 

The role of patent advocacy within the biopharma industry has taken on increasing importance in the past decade with the majority of established and emerging companies. Engaging with and acting on behalf of patients is at the core of this business sector, and company leadership is relying on these professionals to help triage the challenges this role typically confronts; including disease awareness, clinical trial recruitment, drug development and regulatory involvement to name a few. This function is becoming a common necessity in all corners of the industry sector and companies like Medable recognize that when patients speak the entire industry listens. 

 

 

8 min read

Diabetes: It’s a Family Affair

By Paul Kidwell on Dec 1, 2020 12:33:11 PM

The world changes for people diagnosed with diabetes. Moreover, their families, loved ones, and friends are also impacted; and not merely as spectators.  We realize, however, that as is the case of most diseases or medical conditions, health issues not only impact the patient, but those close family members, friends and loved ones as well.

Diabetes affects everyone in some way. It not only affects the individual with the disease, it also affects those who live with the person or somehow involved in the life of the person affected by the disease. There are over 34 million people in the United States living with diabetes, with 1.5 million new cases presenting each year. A small, but significant group of that larger contingent consists of people under 20 who have contracted the illness. In fact, over 208,000 young boys and girls have Type 1 or Type 2 diabetes and for them their illness is truly a family affair. 

How well families cope with these changes can mean the difference between rapidly worsening disease and a relatively healthy life. It's an opportunity for families to strengthen their relationships with each other and to improve every member's overall health. But it is not without a serious commitment to patient health and well-being. That was certainly the case with the Shumsky family of Ann Arbor, Michigan; and sister/daughter Erica, who was diagnosed with Type 1 Diabetes at the age of 9. 

Her diagnosis came as a complete shock to her mother, Jen, as she saw this otherwise healthy young child  diagnosed with  this disease and tried to figure out what Erica’s illness would mean for her as the rest of the family which included Jen’s husband and elder son. That was six years ago, and recently Jen and Erica spent time with me discussing the influence and challenges of diabetes on the Shumsky family.

Jen and Erica 1

Medable: Briefly please share Erica’s story.

Jen: I had been an RN for 19 years when Erica was diagnosed with Type 1 Diabetes (T1D) in 2014.  We also have a son with a rare disease, Duchenne Muscular Dystrophy, so my husband and I were no strangers to taking on additional duties when it came to additional medical needs in our children.  Erica was having some nighttime incontinence that originally appeared to be connected with a growth spurt as she had grown a bit taller and was looking thinner.  However, after a couple weeks it was not getting better.  The kids had spring break and were home for a week and we watched her drink and drink and drink apple juice.  My husband and I were both familiar with the signs of diabetes, but really couldn’t believe it would affect our family.  We had a glucometer at home that we kept for occasional checks of our son and if family members needed to check.  We decided to check her fasting blood sugar and it was high (238).  

Medable: Was the diagnosis immediate? 

Jen: We called the pediatrician and they sent us to the ER.  They confirmed the diagnosis in the ER with blood and urine testing.  Her A1C (a blood measurement to look at how blood sugars have been running) was 8.9, which is high, but not as high as many will have when they are first diagnosed.  We were told that we caught her T1D incredibly early.  

Medable: What resources were you offered by your medical team to find out more about Diabetes 1?

Jen: In addition to a very supportive pediatric endocrine clinic with nurse educators that were regularly accessible, we were connected with the Juvenile Diabetes Research Foundation (JDRF).  We were also very lucky to have a couple close friends that had T1D that we could lean on for support and advice.  

Erica: I remember I got a bag from the JDRF (called the bag of hope) that had a stuffed bear named Rufus that I really liked.  Rufus has areas on his body where you can practice giving insulin injections.  

Medable: What is the difference between Type 1 and Type 2 Diabetes:

Jen: Type 1 diabetes (T1D, insulin-dependent or juvenile) can occur at any age, but most commonly is diagnosed from infancy to the late 30s. With T1D, a person’s pancreas produces little or no insulin. Although the causes are not entirely known, scientists believe the body’s own defense system (the immune system) attacks and destroys the insulin-producing cells in the pancreas.  People with T1D must inject insulin several times every day or continually infuse insulin through a pump. While its causes are not yet entirely understood, scientists believe that both genetic factors and environmental triggers are involved. Its onset has nothing to do with diet or lifestyle. There is nothing you can do to prevent T1D, and — at present — nothing you can do to get rid of it.

Type 2 diabetes is much more common than Type 1.  Type 2 diabetes typically develops after age 40, but can appear earlier, and has recently begun to appear with more frequency in children. In this form of diabetes, the pancreas still produces insulin, but the body does not produce enough or is not able to use it effectively. Treatment includes diet control, exercise, self-monitoring of blood glucose and, in some cases, oral drugs or insulin.

Erica: It frustrates me at times that people do not understand that there are different types of diabetes. There is a lack of understanding that type 1 is something that just happens to people.   I do sometimes get frustrated  by all the diabetes memes and jokes out there about getting diabetes from eating junk food and lifestyle choices.  Many times people will see me eat something they deem unhealthy and ask if I should be eating that.  It doesn’t matter what I eat with my type 1, I will always have to take insulin for it.  I eat a fairly healthy diet and participate in school sports including field hockey and lacrosse,  which is just the opposite of what many people may think when they learn I have Type 1. Plus, because of this disease I will always be insulin dependent because my body does not make it naturally.

Medable: What was this new life this disease was presenting to you? 

Jen: Suddenly I had to do algebra every single day to figure out how much insulin to give based on how many carbs were in the food she was eating.  Never realized I really would need that much math  in my adult life.  We had to check her blood sugars every 3 hours at night at a minimum.  In those early days, my husband and I would do this together to learn the process.  We progressed to taking turns.  

Erica: I am now 15, but at the time of the diagnosis, I was very scared of these words, I really did not know how my life was going to change in the beginning. When I learned more about what I would have to do to keep myself healthy, such as daily injections or counting the carbs that I eat.

Medable: What was the emotional impact of this diagnosis? 

Jen: As a parent it is just devastating when your child is given any type of challenge in their life.  You want their life to be as easy as possible.  A serious medical diagnosis is hard, especially when it is going to be an ongoing lifelong condition, that is impacted by stress, hormones, food, exercise, alcohol, and countless other things.  Your child loses a bit of childhood when encountered with so much responsibility.  For my husband and I, we had already had one horrible diagnosis day when our son was diagnosed, so in perspective, this T1D diagnosis was so very hard, but knowing that if we worked really hard we could control some aspects of this disease was so encouraging.  

Erica: For me, I was very scared when the doctor came in and delivered the diagnosis. I remember crying and wondering why this was happening to me. I think the emotional impact for some is bigger than others. From my personal experience with this disease, I have learned that it is ok to have multiple mixed feelings, there is no one right way to feel. 

Medable: What has been the impact of the past few years living with the illness?

Jen: Technology has come so far in the 6 years since Erica has been diagnosed.  She started on a CGM (Continuous Glucose Monitor) about 4 months after her diagnosis as she had (and still has) hypo unawareness (she does not feel low blood sugars).  When she started with a CGM she carried a small receiver with her that would read her sugars, now her phone reads her blood sugars and sends those readings to our phones, so we always know how she is trending.  She also has been on an insulin pump for about 5 years.  The technology in pumps is constantly improving.  She now has a Tslim X2 pump that works with her CGM in what is called Control IQ.  This Control IQ system works by giving her extra insulin if her blood sugar is high and reducing her insulin if she is trending low.  Erica has come so far in learning how to manage her condition also.  As she is about to turn 16 next month, we need her to be responsible as she takes on driving and other activities.   

Erica: These past few years have been easier than the first to second years of living with type-one. Everything has gotten a little bit easier, for example, counting carbs has gotten way easier for me because I have been doing it for so long. Another thing that has been easier is knowing how to correct my blood sugar and how to keep it in a manageable range. I also have a pump as well. The pump makes life so much easier to manage. The pump I have is the Tandem X2, this is a great pump that has definitely changed my life for the better. 

Medable: Jen, how do you separate your role as a mother with that of a caregiver?

Jen: Well actually, I think all parents are caregivers.  What level of care you have to give your child is different in each household. I chose to become a nurse many years ago because I am a caregiver at heart, it brings me joy.  My husband and I decided early on that we were not going to parent our kids any differently than we planned because they have medical issues.  They have chores and expectations, they are punished and rewarded the same as their peers.  

Medable: Erica, how do you separate your “lives” as a teen-ager, student, patient?

Erica: I think that I separate my “lives” in different ways, but ultimately, they are all connected to each other in some way. As a teen, I have to make sure that my sugars are controlled if I'm going somewhere. If my sugars are too high or too low, it is very difficult to concentrate on schoolwork, If I am taking a test or a quiz, I must try to make sure to keep my sugar in the normal range. Lastly, as a patient, I like to think that I am a pretty decent one. If I see someone else in public that is a fellow “diabuddy” especially if they are younger than me, I will try to smile at them and I will show them that even though we have this disease, we can still be happy, healthy and amazing people. 

Medable: Erica, how supportive have your friends/classmates been?

Erica: My friends have been very supportive of me, from the time that I was diagnosed, there were friends that came to visit me in the hospital. Whenever I have told my classmates that I have T1D, they have also been very supportive as well. Some of my closest friends are like built-in reminders to check my sugars to make sure I’m alright. I love my friends to death, and I am definitely very glad to have them and that they love me too and look out for me.

Erica 2 - Friends

Diabetes Patient Resources:
Association of Diabetes Care & Education Specialists
Diabetes Foundation
Juvenile Diabetes Research Foundation

Topics: PAC PatientCare Diabetes DiabetesAwareness
8 min read

Profiles in Caring

By Paul Kidwell on Nov 30, 2020 1:35:45 PM

Former First Lady, Rosalyn Carter, is attributed to a quote that perfectly sums up the impact and the deep reach of caregiving in all of our lives.

"There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers."

There are over 50 million people in the United States who care for adults and children afflicted by some type of medical condition, with illness preventing these individuals from caring for themselves. Whether caring for an elderly parent, a seriously ill spouse or child, or some other special person in need, those individuals who are on the front lines of caregiving put themselves second as they immerse themselves in a life of personal sacrifice of time, energy, and income. 

In this Medable blog we celebrate November as National Family Caregivers Month and highlight the lives of four individuals who are caregivers.  Legions of people call themselves caregivers and do so in quiet strength and without expecting anything in return for their selflessness. It is an isolating existence; one that often produces a sense of frustration and despair. We live in a culture where a growing contingent of Americans are thrust into this role - we call upon everyone to support them during this month and always. 

Daniel Zahn
Project Coordinator, Medable

My Son Ethan was born with CHARGE Syndrome in 2017, so my wife and I have had to take on the caregiver role as well as being new Parents.  Caregiver duties include drawing up daily medications, giving meds, g tube feedings, trach care, suctioning, and transportation to numerous Doctor visits per month at Children’s Hospital. 

Q: How do you balance your two lives; caregiver and non-caregiver?

My Son Ethan has a Physical Therapist, Occupational Therapist, Speech Therapist, Vision Therapist, and Hearing Therapist that all come to our home during the week.  During the pandemic, the home visits have stopped, but the therapy sessions continue via zoom meetings. This is not ideal, but my wife and I have become a ‘jack of all trades’ to help continue Ethan’s progress. Juggling work and therapy sessions has been challenging and tiring.  We do what we have to as parents and caregivers to make it work the best we can.

Jennifer McNary
Consultant. Public Speaker. Advocate. Non-Profit Leader
Manager, McNary Consulting

I was 18 when my oldest son Austin was born. He was a normal healthy baby but by age 3, following my second son Max’s bith, it was apparent something was wrong. Austin and Max were diagnosed with Duchenne about 3 months later. My now 13-year-old youngest son was diagnosed three years ago with primary immune deficiency at 10. So, I am a mom and caregiver to three sons with rare diseases.

I have always tried to separate being a mom from day to day caregiving by having daily help with Austin and Max's physical needs. At 21 and 18 they need total care, lifting, bathing, grooming, everything. I have had to work and have additional clients to earn enough money to supplement the personal care budget afforded to us by state medicaid. It's important to me that Austin and Max have care from professionals- I don't like the dynamic of being the only caregiver. That said, I don't have 24/7 care for them- so much of it still falls on me. James needs weekly infusions, which I have to provide him. That can be a battle- what 13 yr old wants his mom pushing needles into him every week. It's hard to even get them to shower at that age and take a multi-vitamin. Caring for the boys’ healthcare alone can be a full time job - from juggling specialists visits, appealing denied medications and durable medical equipment, to making sure they have all of their specialty meds. So much paperwork. It's mentally draining and there aren't enough hours in the day. I often joke that I need an admin, just to deal with that piece. 

Q: How has the pandemic impacted the emotional strain that already existed as a caregiver?

Worrying about bringing the help we need, PCAs, nurses, etc into the home has weighed on me. On one hand, I can't do this alone- it's been almost 9 months.  For the first month, I didn't have anyone come into the house. It was way too much work for me to do alone while working full time and juggling my 9-year-old daughter's remote schooling and care. On the other hand, my sons likely wouldn't survive COVID. There would be so much guilt on my side if someone I brought in gave the virus to one of the kids. Their immune systems are all compromised- I have seen James be intubated when he caught paraflu at age 9. I think I have a fair amount of secondary medical trauma so we live in fear of people. I'm also totally alone with the kids. As a single mom, I used my work travel and time away as a time to recharge - it’s going to be a long time before that can happen again. 

I've also had to give a lot of thought to what we would "do" if one of us got COVID. What would the kids do if I was sick and couldn't care for them? What if I didn't survive? It's crazy, maybe, but it took this pandemic for me to buy life insurance, and to start on a will. I realized they really only have me. These terrifying thoughts are what keeps us isolating as long as entirely possible. 

Q: How do you make sure that you have “me time?” Describe those private moments.

I am a huge believer in maintaining a sense of self even with kids, especially with kids with health conditions. I take what some might call excessive amounts of time to myself. I set reminders on my calendar to exercise on my spin bike or do yoga daily- I walk the dogs, I take time to read and write when I feel the urge. My kids are as independent as they can be, and I encourage them to find ways to do things themselves if possible. I also have regular help, as I mentioned. I don't believe in being a martyr - I don't think it helps your loved ones to believe you're the only one who can care for them either. With any luck, they will outlive me and need to learn how to have others do things for them as well. I used to add a few days or sometimes just hours to every work trip - just to explore. I love to travel - I love to try new foods and see new sights. The kids and I travel a fair amount together, but that's usually exhausting. Where traveling alone or with a colleague is energizing. I hope we can get back to that life soon!

Rasmus Hogreffe
VP of DCT Innovation, Medable

When my dad was diagnosed with Prostate cancer eight years ago. It was a shock for the whole family, and due to my medical background, I was the obvious choice to support him where and whenever needed. He passed away three years after his diagnosis and my role as caregiver expanded during that time as the disease progressed. The most challenging part of being a caregiver is realizing that you are about to lose a significant person in your life. In the last days of his life, you live in constant fear of the next call, is it now, is he dead, is he dying? This phase took out all my energy, making it difficult to cope. Unfortunately, I didn’t cope as well as I should because I kept all my feelings of sadness and impending grief inside without sharing with others. The experience made me think that I needed to be more open with my feelings, something I hope to improve upon in a future and similar situation. 

Q: We talk often about how our healthcare system needs to account for indirect costs of being sick, such as lost productivity and the emotional toll for both the patient and their caregiver. Can you expand on what these indirect costs mean to you? What are you doing to help offset these costs?

I believe that you only have 100% mental capacity. When you are a caregiver, you allocate a big amount of this mental capacity in taking care of your loved ones. This directly effect productivity, which can and will result in increased frustration and loss of focus. We are all unique and we all have different ways to measure the value of a treatment. There is definitely room for improvement in this area. I do not believe that we will be able to measure this 100 percent accurately. But by utilizing technologies where the patients and caregivers are, we would be able to collect precious data that could help us calculate a more precise value of a treatment. As the shadow of the patient, a caregiver will rarely be recognized, but the importance of this role is a fact and will never disappear. The value, however, comes mostly from the patient and not from others outside that experience. The industry must recognize the value of caregiving and that behind a patient, there is nearly always a caregiver/caregivers involved. It has taken far too long to put action behind the words “patient centricity”, let’s not make the same mistake with the patient caregivers. 

Ching Tian
SVP, Strategy and Solutions
Medable


In February 2019, my dad was diagnosed with late-stage gastric cancer. A month later, my mom found out that she has breast cancer. My brother and I barely had time to absorb the shocking news before we had to spring into action. My brother lived in northern California, near my parents, while I lived across the country on the east coast. We immediately started looking into treatment options and reaching out to doctors for second opinions. We had to make difficult decisions to try to balance their quality of life while not giving up the fight. For almost a year, my dad and mom not only went through chemo, surgery, and radiation therapy but also dealt with multiple emergency room visits and hospitalizations in between. In January, my dad lost his battle with cancer and passed away. My mom has now been cancer-free for a year but is coping with the progressive symptoms of Parkinson's disease.

Q: The term “patient-centricity” is often used to describe how biopharma companies involve patients in each element of the drug discovery/development process. How would you define “Caregiver-centricity?”

Over the past few years, I have been working on patient-centric clinical trial solutions with the key objectives of expanding patients' access to clinical research and reducing patients' burden of participation. The focus has been almost exclusively on the patient, and the caregiver was only brought up occasionally. Through undergoing the intensive caregiving period for my parents, I realized the importance of the caregiver role. For some patient populations and diseases, many patient care activities are handled by the caregivers. Some caregivers participate in making treatment decisions. The burden on the caregivers can be immense, and sometimes a patient has to rely on multiple caregivers working together as a team. Their ability to support the trial participation, in person or sometimes from a remote location like in my situation, can determine whether the patient can participate in the trial. Therefore, we have to incorporate caregiver-centricity in our solutions. Making caregivers aware of research opportunities and providing tools for convenient study information access (e.g. managing visits, medications, reporting events, and communicating with the site team) can ultimately help the industry achieve patient-centricity. 

Topics: PAC PatientCare caregivers caregiving awareness