Research from the Patient Perspective

As a patient, what would you like to see as a research study? 

This isn't an easy question to answer because most of us don't really have much of an idea what goes on in research studies. Even when we are participants in clinical research, patients often never hear what the results are and, according to the many experts I heard speak at the PCORI Annual Meeting, it can take years before research results have any effect on clinical practice. Results are published in medical journals which are not easily accessible by patients, either because of the cost or because the technical language makes it impossible to understand.

PCORI or the Patient Centered Outcomes Research Institute is trying to change this. It isn't an easy task as it is asking for a radical change in how scientists and clinicians look at research. They are insisting that researchers include patients in every aspect of this process, even - and perhaps especially - in deciding what is important to study. What outcomes matter to patients?

On the last day of the meeting, I attended a session titled, "Applying the Patient Experience to the Research Process". This was a learning lab session and a process in how to figure out how we can answer the first question. As a patient reviewer for PCORI, it also helped me to understand better how I can approach reading and critiquing funding applications.

The presenters, Suzanne Schrandt JD, Deputy Director of Patient Engagement at PCORI, Jaye Bea Smalley MPA, and Lisa Stewart MA, Engagement Officers for PCORI, first assured us that we, as patients, are experts. We have been living with chronic health challenges and know better than anyone what changes we would like to see happen. Then, they asked us to reflect on those experiences we've had with illness or injury which have been very powerful, both the good and the bad.

We then chose one of those experiences and tried to formulate a question around it. What are the key points we want to make? What are the details you want to get across? How can we create a narrative to illustrate why we feel this is important. 

Another presenter from earlier in the week, Chip Heath, talked about how to communicate in a way people will listen and understand. The best example was about nutrition. I loved this one! He showed us an educational slide talking about the amount of saturated fat in whole milk compared to the recommended daily allowance. It was okay, but it was really just numbers. Then he showed us another slide with simple graphics showing us that the amount of saturated fat in a glass of whole milk is equal to the amount of saturated fat in 5 pieces of bacon. 

The moral of this story? If you're going to have saturated fat, would you rather have a glass of milk or 5 pieces of bacon?  This is something people will understand and remember. (Not that anyone is suggesting bacon is healthy. There's a few other things to take into account.)

So, back to the first question, what would I want to see researched? 

One of the most challenges aspects of managing my Parkinson's disease has been medication. How do we find a balance between managing our health and avoiding the inevitable issues of the less desirable effects of drugs? Would it be possible to have a comparative study which would look at patients who are having more symptoms or more off times and divide them into groups: one group of patients would have their medication increased, another group would start an exercise regimen instead of the increasing the meds. Another group could start a conscious, healthy diet (study determined) instead of the increase. Another group could do both the exercising and the diet instead of increasing meds. 

The ability to manage symptoms without increasing medications would be a huge positive outcome as far as I'm concerned. 

I have no idea how feasible a study like this would be, especially when it comes to scientific merit and protocol, but it's worth putting these ideas out there. The wonderful, awesome, exciting thing is, now someone will listen! PCORI is interested in our ideas. For more information on submitting ideas, go to PCORI's website - Suggest a Patient Centered Research Question. They'll even help you learn how to do this. 

PCORI doesn't just talk about patient engagement. The inclusion of patients in every step of the research project is required for receiving funding. PCORI includes patients as well, in every part of their work. As a patient reviewer, I know my voice is heard and considered as important as the voices of the scientists and clinicians. They respect us as experts.

They also made sure to include patients in their Annual Meeting. I am so glad I was able to go and am grateful for the scholarship I received. It was educational, exciting, and reassuring to see the direction this field is going. It was amazing to hear speakers talking about projects where this is already happening. The organizers kept the meeting moving and lively. They took good care of us.

We even had bacon for breakfast. 

The PCORI Experience - The Key

I arrived home this morning from attending the first Annual Meeting of PCORI - Patient Centered Outcomes Research Institute. Over the next week or so, I'll be posting some short articles about this experience. They will probably be sort of random, working like my mind and memory work as I try and process all the information I received. 

Here is the first:

THE KEY

It hangs from my coin purse because I don't take my keys with me when I travel. The plain silver key has not been cut and doesn't fit any lock. It's a reminder of all the people who do not have keys. It's a reminder of my obligation to speak for those who do not have keys.

We were listening to a panel on the topic of Engagement of Patients and Other Stakeholders in Research. There were three groups represented,but Loretta Jones will be the one I don't forget. She and Dr. Clete Kushida spoke about their work with Healthy African American Families. I encourage you to look at their website. Loretta recently received the Honorable Diane E. Watson Community Service Award from the United Nations for her work addressing disparities in health care.

Which brings us back to the key. While Dr. Kushida and Loretta were speaking, we were handed keys. Loretta asked us about our own keys. What do they open? House, car, safety deposit box, bicycle lock, a gym locker; these were a few of the answers given. Keys represent access and assets. A house key means we have a place to live, an anchor. A car key or bicycle lock key means we have the ability to easily move out of our area and see more of the world.

There are other keys which are not visible, but are important: access to health care, access to transportation, access to education. This list is just a beginning. Who are the people without keys? The homeless, the uninsured and underinsured, those who don't have transportation to a doctor's visit, those who don't have access to healthy food, those who do not have an advocate.

At the PCORI Annual Meeting, there were scientists, clinicians, nurses, social workers, health insurance representatives, lawyers, patients, patient caregivers, patient advocates, and more. Who, among all these groups, is going to speak up for those who don't have keys?

It's the responsibility of each one of us. As a patient advocate and patient reviewer for PCORI, what can I do to bring attention to the needs of people who do not have a voice, those who are marginalized by being part of a minority group or stigmatized by a health condition? Can I look at clinical studies and try to sort out whether and how the studies will help those who have no voice - no keys? 

Good Timing

Timing is everything, so they say. I'm not sure exactly who they are, but in this case I'll give them credit. Timing is important. It's the difference between a gourmet dinner and something we feed to the chickens. Good timing was getting to the bank to refinance our mortgage on the day the interest rates hit their lowest. Bad timing was arriving in Chicago at the same time as a major flood.  

Not great timing was applying for a scholarship the day before the due date to an almost full conference when the scholarships were first come, first served. I had seen the emails about the Annual Meeting for PCORI (Patient Centered Outcomes Research Institute) and hadn't even considered going. I couldn't afford it. I didn't open up the specific info and didn't see the scholarships until it was almost too late. I applied anyway, just because. 

The day of the scholarship announcement came and I heard nothing from PCORI. I did receive a phone call, however. It was my sister letting us know that her 27-year-old daughter, Jenny, had been diagnosed with a rare cancer, a high grade sarcoma. My niece is very close to us geographically and in our hearts and with her parents in California. I knew we needed to be present for her and make sure she had the support she needed. I was glad I hadn't heard from PCORI at that point.

Things moved very quickly after Jenny's diagnosis. I took care of her 16-month-daughter while Jenny had a PET scan and MRA. After taking everything into consideration, they decided they would go to the Sarcoma Center at UCSF for treatment. She and her husband had already decided they wanted to move back to California. Jenny wanted to be close to her family. They went back last Thursday and had their first appt at the Sarcoma Center on Friday. 

The good news is the doctors were very positive. The cancer has not spread and they are confident it can be treated. More good timing. Jenny and her daughter will stay there and her husband will come back to Colorado to work on getting his job transferred to California.

Two hours after I received this good news, I got an email confirming my hotel room for the Annual Meeting in Virginia. Nothing else, just the confirmation from the hotel. I made a few calls and waited. And waited. Last evening, I finally emailed my mentor and said I was assuming I wasn't going anywhere so maybe I should just cancel the hotel. 

Ten minutes later, she wrote back and another email came with the rest of the details. Yes, I had indeed received a scholarship and they would make arrangements for me to come. I sat and stared at the screen in shock while the puppy we are watching calmly chewed a hole in my 2nd best shirt - while I was wearing it. I kept staring wide-eyed, mostly because with all the to do, I had forgotten my meds and wasn't blinking. Timing again.

I freaked out for approximately ten minutes. I can freak out quickly if I need to. I felt badly I would miss seeing my brother and sister-in-law who are in town - BUT - now I know there's someone here in case there's an emergency with our parents. I was sorry to miss my daughter-in-law's father, who is also visiting - BUT - he will be helping out with the grandchildren. If there was ever a time when I could get away, this was it.

Chris encouraged me to go. He knows I enjoy travel and enjoy working with PCORI. I'll learn a lot and meet a lot of people. And I'll probably come back exhausted. If the scholarship notice had arrived on time, I would have declined. The timing wasn't right until I knew Jenny and her family were settled.

Chris, meanwhile, will have a nice quiet week, mostly to himself as Emma is back in classes during the day.

Good timing.

Living Simply isn't Easy

“Our life is frittered away by detail... simplify, simplify”

— Henry David Thoreau

It's one of those things that happens on a regular basis. On the New Rating Scale for Parkinson's disease, I'm at Stage 8. Time to yell D0 OVER at the top of my lungs, take a deep breath and get to work.

This time, I'm trying to simplify everything: my house, my schedule, my cooking, my craft work. If you don't quite believe me, I understand. You either know me well or you've been reading my blogs. Simplifying is not easy for me. I'm a little scattered. This means I'll start half a dozen projects and audit a class at the university and invite family for dinner. It means I inherited my organizational skills from my father which means I can eventually put my hands on whatever I need, but no one would guess that by looking at my desk which, incidentally, used to be my father's desk.

I also inherited my father's tendency to say yes to everything and to volunteer for everything else. I heard someone call it a "martyr syndrome", but it's not really that at all, at least not with my father and not with me. It's more of an impulsive, not really thinking of anything except what's happening in the moment kind of thing: "Yes, that sounds like fun! Of course I can!" 

Lately, too many obligations have made me realize I have to cut back. What's the most frustrating symptom of Parkinson's, besides the loose spigot which turns the tears on when least expected? Lack of stamina. I have to finally admit to myself I don't have the energy to do everything I want to do and everything I need to do. It's time to prioritize.

Time - my biggest priorities now are helping to take care of our grandchildren and helping to take care of my parents. Since Mom and Dad are in assisted living, I'm not as on call as I once was, but I still take them to doctor's appointments, pick up their prescriptions, and take them shopping. The grandchildren are with us on Fridays and everyone comes for Saturday dinner. Anything I do above and beyond this will have to be considered carefully. Keeping up with parents and grandkids takes most of my energy. 

Crafts - At this point, I'm not as interested in pursuing every craft out there. When I see something handmade, I don't immediately start to figure out how to make it. I just think, "that's cool!" I've narrowed down my craft work to something I can take along and do while waiting at doctor's offices. I'm knitting. I've also kept my bookbinding supplies. Everything else had to go.

Which brings me to stuff. Slowly, but surely, anything we're not using is being given away or recycled. Everytime I take another box or three to the thrift shop, I feel oh, so much lighter. Stuff has to be taken care of. I have enough caregiving to do without having to take care of unnecessary stuff. It's my mother-in-law I look to for inspiration. She gave so much away before she moved into a nursing home, it took about ten minutes to divide the rest between her children. 

It's not something that will happen overnight, but I'm determined. The craft stuff is gone, I go through my clothes regularly and pare them down to the minimum, our little free library is visited often and books find new homes, and slowly closets are becoming a little less crowded. 

To my kids - if there's something you want, better let me know! Mom is on a roll.

The Patient's Voice - A PCORI Experience

I wish I could say I did this for purely noble purposes, but I have to admit, part of the draw was being able to travel to Washington D.C. for the in person panel reviews. Now that I'm home, I'm still very glad I went, but for different reasons. To attend and be the voice, the advocate of patients in the decision making process for funding clinical studies is an amazing and humbling experience. 

I found out about PCORI from my niece, Anne Schuster, who received her Master's degree in Health Economics at Johns Hopkins University. She knew I had been on patient panels at the University of Colorado Medical School and School of Pharmacy and she knew I valued the chance to speak on behalf of patients. She suggested I apply.

I was assigned 4 applications to review under 3 different criteria. I did not have to grade the appications on technical merit. There were plenty of scientists to do that bit. The criteria we looked at as patients were: whether the study identified a critical gap in knowledge, whether the study was patient centered, and whether there was adequate patient/stakeholder engagement in every stage of the study proposal.

If it was a challenge for me to read and determine the strengths and weaknesses in each of these areas, I know it was even more of a challenge to write up the proposals. PCORI is unique in insisting upon patient and stakeholder engagement and many scientists are struggling to figure out just what this means. So far, I'm truly impressed with the work the organizations have done in this area. For our part as reviewers, it was helpful to have a mentor to guide us and answer our questions. My mentor, Kayte, was very patient.

After writing up my critiques of each application and submitting them, it was soon time to go to Washington DC for the in person panel review. We started early on Thursday with breakfast and a short training. Then we were welcomed by Dr. Joe Selby, the Executive Director of PCORI, and others. Then came the actual panel reviews. We presented and discussed each application before giving them our individual scores. Everyone had a chance to speak and everyone's voice was respected equally. The discussions were quite lively. 

Dinner was lively the first night, too, as Kayte and company cheerfully welcomed me to sit at their table. I found out what PCORI mentors and staff do when they're not working. Before long, someone mentioned the new tequila diet, which certainly must be a great idea for another study proposal. The conversation went round and round and I laughed till I hurt. At some point, the originator of the tequila idea looked at us seriously, "But no salt and no lemon. This is a clinical study." And we all collapsed laughing again.

After dinner, I went for a walk with a very nice young doctor. Most of the doctors seem young and I felt a bit like a grandma. Oh, right. I am a grandma. We walked around a few blocks and then back to the hotel, where a nice staff person saw me and came over to give me directions to my room... again. Time to rest up for another day of reviews.

If invited, I would do it again. I believe in what they are trying to do.

Interested? There are many ways to get involved. Start here! Let me know. Maybe one day we'll be on a panel together. 

It's the People

The best thing about traveling is the people, especially when traveling alone.

I'm on my way back to Denver from DC, my first trip as a PCORI reviewer. I didn't know what to expect, except I knew I'd be with a lot of scientists, doctors, and other professionals. Though I was a patient reviewer, I also knew they would listen to me and take me seriously. The patient perspective carries a lot of weight in PCORI.

All along the way, I've run into the loveliest people. It's amazing and humbling how the simplest moments can mean so much. I'm grateful for all these moments.

It started before I left Denver. I am grateful to the man in security who whisked me off into the fast lane, put my bags through for me, didn't ask me to take off my shoes, and had me through security in less than 5 minutes. At the gate, I got a nice surprise when a familiar face appeared and I learned that my friend, Thom, from our Rainbeau dance club works for Frontier and just happened to be working at my gate. He made sure I had everything I needed and sent me off with a smile and a hug.

From my time wandering along the National Mall in DC, I'm grateful to the two women who chatted with me and helped me figure out directions. Actually, we worked together. If you ask someone on the Mall for directions, you're more likely to find out they're from your home town and they don't know where they're going, either. I'm also grateful to the young man working at the Franklin D Roosevelt Memorial who gave me real directions, including a map, and walked me to the bus stop, just to make sure I didn't get lost....again.

I'm grateful for everyone who directed me to the right subway, to my hotel, and to my room. The hotel I stayed at was the Wardman Park Marriott Hotel, the one close to the National Zoo. It was EXCELLENT! I highly recommend this place. It is an interesting building.... M. C. Escher kind of interesting. To go from the lobby to the 1st floor, you take the elevator UP one flight. To get from the lobby to my room on the 5th floor, I had to take a different elevator DOWN three flights. In between was approximately 20 miles of hallways and desks and more hallways, and helpful staff who were always happy give me directions... with a smile. They would even check with me later to make sure I had found my way. Thankfully, I brought my scooter.

The PCORI experience I'll write about later, but for now, I'm on my way back home, sitting in the middle of the row on the most uncomfortable airplane. I hope no other airlines decides to copy Frontier's new seating. But my seatmates were great. The young man sitting by the window didn't seem to mind when I asked him if he could look out and tell me where we were. He taught me how to say “good morning” in Amharic. I still can't pronounce it. When the plane started to descend, I asked him to teach me how to say goodbye. I figured I might have it down by the time we landed. I got this one much quicker... “Ciao!”

Last, but not least, when I went to get on the shuttle, the driver greeted me by name. Chris had made the reservation and the driver was looking out for me. And, of course, Chris and Emma came to pick me up at the shuttle stop.

I'm home, exhausted, but happy. I got lost all over town, on the trains, and in the hotel. If I'd had a smarter phone, I probably wouldn't have needed to ask for directions.

What fun would that have been?

I have to say, Franklin was particularly hot that day. Very hot. Bronze statue in full sun. 

Mrs. Reinhart Goes To Washington

It might look like I'm working, but in reality, I haven't been able to concentrate on doing much reading and studying today. Tomorrow morning, long before any sensible person is out of bed, I'll be on my way to the airport and off to Washington D.C. 

This has been planned for awhile. While I'd like to say I had very noble reasons for applying to review funding applications for clinical studies, the trip to DC was the real incentive. I love to travel. I love seeing new places and finding my way around a new city. I enjoy meeting and talking with people from all over the place. I love to travel. Because I am leaving at such an early hour, I'll get a chance to explore a little. Maybe I'll see the White House? I love to travel.

Maybe if I say it a few more times, I'll stop being nervous. I LOVE TO TRAVEL! 

It didn't work. This trip is just a little bit different from my usual travels. For one thing, Emma won't be coming with me. I'm going all by myself. Solo. No one to pick up my shoes for me when I almost leave them behind in security. When I arrive in DC, there won't be familiar Ronald McDonald House staff to greet me. I'll have to buy my own lunch and dinner.

It's a work trip, of course, and I have to be prepared to give my presentations on Thursday and Friday. Yes, I'm nervous. Not only will I not know anyone, but this is a PROFESSIONAL meeting. People are wearing "business casual" clothing. I finally consulted a former colleague and friend to guide me in finding something that didn't look like middle-aged retired kindergarten teacher. I can do this... and hopefully, not squirm my way through the meetings. The others on the panel will be scientists, doctors, and other experts. And me. What in God's name made me think I could do something like this? 

What if my Parkinson's and dystonia kick in big time? It does when I'm nervous. What if I start walking wonky, my balance is off, and I start slurring my words? What if they think I'm drunk? Okay - do I have my "I am not drunk" card with me? Check. 

So, yes, I'm nervous. Instead of reading and preparing, I've been panicking. I've been to the store twice already getting toothpaste, tooth brush, and deoderant. The hotel experience is one I haven't had in years. I couldn't remember what I needed to bring. Almost... I almost wrote a friend to ask whether I needed to bring soap and shampoo. How many pens do I need to bring? Will I need some paper? Where are the socks I had hanging on the clothesline? What if I run out of deoderant?

My family (Chris and Emma) gently reminded me that, though neither of them had ever been to DC, they were fairly certain I could find a store there. 

I'll be fine. I've got my clothes, my notebook, my computer, my phone, all the various cords that go with phone, computer, and scooter. I have "The Last of the Dragons" by E. Nesbit, my little book of Welsh phrases, and my knitting. I'll admit, the last three are security items. Don't laugh.

I'll be fine... as long as I remember my shoes after I go through security. 

Pray for me? Let me think about it.

I'm not embarrassed by my Parkinson's. I don't want sympathy because of it. I don't generally say much about it, but when an old classmate of mine was taken aback after I told her I was retired, I was suddenly self conscious. Not wanting her to think I had retired because I didn't want to work, I told her it wasn't my choice, I had left teaching after I was diagnosed with Parkinson's disease. 

She looked at me earnestly, put her hand on my arm, and said she was sorry. I was confused at first. Sorry I was retired? Oh. That's right. I have Parkinson's disease. She asked if she could pray for me. 

It was my turn to be taken aback. Not that I have anything against prayer. There is a lot I question about religion and spiritual matters, but holding an individual in warmth, interest, and love is not something I question. Whether or not there is a God listening in and acting on their prayers is secondary.

Regardless, I have not always been comfortable with the Christian idea of prayer. When our daughter did so well in the NICU after being born at 28 weeks gestation, a colleague told me she was sure Emma was doing well because so many people were praying for her. Something in me snapped. And... the little girl who died in the NICU the day before? Did she die because not enough people prayed? I know all the standard Christian responses to this and I still struggle with it.

For now, I have my own request. If anyone wishes to pray on my behalf because I have Parkinson's disease, please do not ask God to cure me. I do not want a miraculous, magical cure. You're welcome to ask God to nudge the researchers in the right direction for a scientific cure. A miraculous, magical cure would only affect me. That's not fair. If there is a cure to be had, it should be for everyone. I'm sort of a spiritual socialist.

I stumbled around before answering my old classmate. Yes, of course she could pray for me. I just wanted her to realize I see my Parkinson's as much as a gift as anything else. There are so many people I wouldn't have met, so many things I would never have been able to do, and so much I wouldn't have learned if it I didn't have Parkinson's. Those of you who read my blog know this already. I hope she will forward a message of gratitude with her prayer.

On the other hand, my husband has become an expert in the Heimlich maneuver. I'm not sure he looks at this as a gift, so... if anyone is listening up there, I could use a little help with the whole chew, swallow, breathe thing. 

(I'd even take the magical miracle cure for this one.)