5 posts tagged “kidney”

Getting “Patients Included” right Part II: Planning a patient-centric event

Posted November 18th, 2015 by

You may remember Part I of this blog that focused on the experiences of two PatientsLikeMe members who attended the Kidney Health Initiative’s (KHI) workshop, “Understanding patients’ preferences: Stimulating medical device development in kidney disease,” back in August. KHI is a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of Nephrology (ASN). We recently spoke with patient Celeste Lee and Frank Hurst, MD, Medical Officer, Renal Devices Branch with the FDA, about the planning and consideration it took to make this event “Patients Included.”

While this was the first patient-centric event KHI has held, they’ve worked to include the patient voice in all aspects of the initiative. Kidney patients and kidney patient organizations are represented on the KHI Board of Directors, and this past year the KHI Board of Directors formed a KHI Patient and Family Partnership Council (PFPC) made up of only patients and their caregivers. The PFPC helps provide strategic guidance on how to engage and include patients, their families and care partners in KHI activities.

Celeste has had kidney failure from an autoimmune disease since she was 17. She’s been an advocate for decades and is now focused on patient-centered care. Celeste is also a board member on the inaugural PFPC and helps review potential projects from a patient and family member viewpoint.

“The way KHI works is that it brings everyone to the table – researchers, industry professionals, patients – and we ask what is it that we can do to improve research and clinical trials and ultimately, patient lives. We do this through specific projects like this workshop,” she says.

Involving patients from the get-go

As part of this particular workshop, KHI wanted to hear patients’ ideas and preferences on new devices to manage kidney disease. Before anything, though, they had to create an event that would provide the greatest value to patients that attended in person.

When we asked Frank and Celeste what goes into planning an event like this  they shared how they think it can be centered around the patient:

“Involving patients early helped us to realize the need to broaden efforts to educate patients on the topics of interest prior to having the workshop. This proved to be a critical step in the planning process,” says Frank.

“We realized it would save time to educate prospective attendees about the new devices via webinars before the workshop,” explains Celeste. “We ended up taking a three-step approach that started with a quick engagement video talking about what we wanted to do. We distributed this throughout the whole kidney community. At the end of the video, there was an invitation to sign up for the webinars. After the webinar we said – now we are going to have a day and a half workshop and we will provide travel grants. Over 50 travel grants were given, funded by KHI so patients could come from all over the country.”

Frank notes, “Although patients are medical device consumers, they rarely have an opportunity to influence products that come to market. The success of a new medical device is based on many factors, including the usability by patients. KHI provided a forum, which allowed stakeholders to hear about ideas and potential solutions directly from patients.”

Looking at it from all angles

While the main consideration was making sure KHI had set clear expectations to patients who attended from the onset, there were additional logistics to consider for the workshop to be as patient-centric as possible. The workshop agenda was arranged around patient treatment schedules and incorporated dietary considerations when planning the menu. Because some attendees are on dialysis or live with transplants, they needed volunteers on hand. KHI planners also made sure to ask for patient feedback throughout the entire event and had scribes in position to record it. This feedback was ready to be shared at the workshop’s closing and will be sent out in an executive summary as well.

“Patients especially enjoyed the small group sessions,” Frank says. “These were multi-stakeholder breakout discussions which tackled important questions such as unmet needs, device areas that need improvement, making clinical trials more patient-friendly, and assessing ways for patients, industry, and regulators to communicate and share feedback.  These sessions included many lively discussions where patients felt empowered to share ideas and come together to propose solutions.”

Patient advice for a patient-centric event

Celeste has simple advice for other organizations that want to have this level of patient inclusion in their events. “I think you start off with a really good planning team that includes patients so that they’re there to help figure out the challenges of bringing that population together. Most importantly – you need to prepare people to be a part of it. You’re not going to get anything of value if people come in cold. It’s about the patient being able to draw on their experiences to help move research forward so if they understand what’s expected of them going in, then the outcomes will be more valuable.”

Frank adds, “It is also important to consider the spectrum of the disease, and ideally include patient representatives from across the spectrum as they could have very different needs.”

“Then,” Celeste says, “the next step is getting them to share the developments within the greater community. Once patients are educated and engaged, they become empowered.”

For a look at the KHI’s 3-step plan, check out this presentation they shared with us! And of course, don’t forget to visit the site and connect with the more than 1,000 other PatientsLikeMe members living with chronic kidney disease.

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Getting “Patients Included” right Part I: Two members attend a Kidney Health Initiative workshop

Posted November 4th, 2015 by

Back in August, the Kidney Health Initiative (KHI), a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of Nephrology (ASN), held a workshop called “Understanding patients’ preferences: Stimulating medical device development in kidney disease.” But this was more than a workshop – it was an event centered around the idea of “Patients Included” – a movement started back in May to involve more patients on the planning committees, stages, and in the audiences of medical conferences.

Sally Okun, our Vice President of Advocacy, Policy and Patient Safety spoke at the event and notes how patient-focused the entire workshop was in that “nearly 100 people among the approximately 150 who gathered for the event were patients living with and managing kidney disease every day, many joined by their caregivers.”

“The patients were very open in the discussions and direct in their questions. Many talked about their experiences with hemodialysis and how difficult it is to live a normal life when one has to be at the dialysis center three days a week for many hours,” she says. “In contrast to the conventional treatment approach, the newer developments for hemodialysis at home were very interesting, and in general, patients felt more in control.”

She concludes, “The KHI did a remarkable job focusing this meeting on patients and their caregivers, and providing resources to cover travel expenses. They should be commended and looked to by others as an example of getting ‘Patients Included’ right.”

PatientsLikeMe members Samantha-Anne (internettie) and Laura (Cherishedone) both received stipends to attend the workshop. We asked them about their experiences and here’s what they said:

Why was it important for you to attend this workshop event?

S: It is important to me as a patient to have a voice in my care and treatment. It was particularly important to me to attend this workshop because I wanted to be a voice for the patient who has not yet arrived at the need for dialysis or transplant and to ask what we can do to prevent chronic kidney disease (CKD) from progressing if possible. I know that not all cases can be prevented, but there are some that can. In my situation, my CKD was caused by the use of nonsteroidal anti-inflammatory drugs (NSAIDs). If the consequences of using these drugs for such a long period of time had been made clear to me and if I had been offered some alternative treatments I may have made different treatment choices.

L: I have always been strongly committed to advocating for myself and others, and being given the opportunity to participate and then bring back the information to others whose lives are impacted by CKD and/or end stage renal disease (ESRD) equips us with insight to better advocate for ourselves.

Is this the first event like this that you’ve attended?

S: Yes, this is the first time that I was offered the opportunity to have a voice in patient care. It certainly will not be the last.

L: I have attended National Kidney Foundation (NKF) meetings with other patients and also participated on NKF committees (Patient and Family Executive Committee).

How did you feel about the focus on patient-centricity at this event?

S: I was thrilled to know that someone cared about what patients have to say about their own care. I think that with the advent of the Internet and patients having more access to information that they are more involved in their own care. Patients know more and want to know more about what illnesses are affecting their bodies and they also want to know what they can do to prevent some of these conditions from happening in the first place.

L: The patient-centricity was one of the most valuable components of the meeting. I am one to be very involved in giving back, but I would guess that for many, their disease leaves them feeling isolated. For this population to meet others who are not only surviving but thriving is very important. My hope is that many participants were encouraged to not let their CKD/ESRD define them, but rather to use it as a vehicle for being empowered and encouraged to live each day to the fullest extent, not be left feeling like a victim to the disease.

Did you feel like they supported you and listened to you while you were there?

S: I absolutely felt like I was listened to at this workshop. I had an opportunity to talk to so many people on all different levels of health care. I had wonderful conversations with Paul Conway (AAKP), Mark Ohen (Gore), Denny Treu (NxStage), Sally Okun (PatientsLikeMe), Prabir Roy-Chaudhury, MD, (ASN) Frank Hurst, MD (FDA), Francesca Tentori, ME (ARCH), and F.P. Wieringa, PhD (DKF). We all had the shared topic of kidney disease to discuss but I was amazed at how many people I had other areas in common with. Paul Conway knew my new hometown of Waterville, Maine, and Denny Treu was familiar with my former home in Colorado Springs, Colorado. I feel like my love of research and my desire to learn new things and to share my experiences made this conference a catalyst for me to not only offer my view but to be asked to participate in conversations that I would not be privy to otherwise. I felt like I was engaged in the process and made to feel that my opinion was valued.

L: Most definitely!

What stood out to you as an attendee?

S: What stood out to me the most was that these doctors and vendors really wanted to hear what the patients had to say. I never felt like someone was asking for my opinion just to be nice or listening just to be polite. They seemed fully involved in what we, the patients, were saying. Being heard, as a patient, is honestly such a rare thing that to have people in places that can make life-changing decisions about our care hear what we have to say, is amazing.

L: Hearing about research that is ongoing as well as new technologies was very empowering, and left me feeling very encouraged about options available to those of us who have reached ESRD.

What was the most interesting takeaway for you?

S: As a patient the most interesting takeaway was that what I think and what I say really does count. As a person who loves research and used to do surveys and metrics for a living, the most interesting takeaway was that taking the time to craft a meaningful survey for patients is important. Turning data (survey results) into action (making a difference for the patient) is key.

L: Hearing about research that is ongoing for new technologies and ways to treat ESRD was most exciting.

What was it like to be able to interact with other patients who were attending?

S: It always helps to know that you are not alone. Even though we all have our own individual paths and we all fall on different places on the CKD continuum, we all have so much in common in how we feel and how we need to be heard. We can laugh at things that other people just would not understand. Kidney disease is not funny, but there is always some humor to be found in any difficult situation and being with like-minded people is good for the soul. Every single patient in that room is a hero. We all have a lot on our plate but we mustered up the strength to get ourselves to that conference to not only help ourselves but to help all those who come along after us. I know I was completely energized by being around everyone and at the same time could feel the drain of the illness that I deal with every day. It was worth every bit of energy it took to be there in Baltimore and I feel incredibly grateful that I was offered the opportunity to attend the conference. I made sure to thank everyone who played a role in getting me there and also to thank the other patients for sharing their stories and their thoughts and ideas.

I have been in my new community, Waterville, Maine, for about 2 1/2 months now. Going to the KHI conference in Baltimore made me realize that I need to be involved in my new town. I found a group walk in the downtown area (Waterville Walks! hosted by Waterville Maine Street), I attended a public health meeting as a member of the community (Healthy Northern Kennebec), and I participated in a workshop down in Hallowell, Maine at the Harlow Gallery (Healing Through Art: Confronting Your Inner Critic). My goal is to find out as much as I can about the resources that are available in this area. I understand that input from members of the community really is important and that the people asking for the input want to hear what people have to say. I am not surprised that so few people attend these community events thinking that they will be boring or useless, but I am doing my part to let everyone I cross paths with know that there is a lot to do out there, that there are unlimited ways to get involved, and that if you keep looking and put in some effort the resources can be found. I am grateful that the KHI conference has opened so many doors for me.

L: I love the interaction with other patients, and the opportunity to both learn and encourage others. I think it was important for many patients to feel they both have a voice and that our collective voices were not only being heard, but welcomed.

Stay tuned for Part II of this blog when we chat about what kind of planning it took to make this event as patient-centric as possible with those who ran it. And don’t forget to visit the site to connect with Samantha-Anne, Laura, and the nearly 1,000 other PatientsLikeMe members living with chronic kidney disease.

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ORE Researcher Series: Tamara Kear is listening to kidney patients

Posted June 25th, 2015 by

Over the next few months, you’ll meet a few Open Research Exchange (ORE) researchers, and first up is Tamara Kear, PhD., R.N., CNS, CNN. She has over 20 years’ practice as a nurse caring for patients with kidney disease. Her research is focused on hypertension, one of the factors that can lead to a person developing kidney disease.

Tamara has developed a scale for healthcare providers that helps them learn how well a patient is doing at home and identify barriers they are experiencing in managing their hypertension. Her goal is to develop a better tool. In her video, she explains her ORE research and her philosophy that patients should be “not just informers for researchers, but actually the researchers themselves.”

What exactly is the ORE? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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PatientsLikeMe launches “24 Days of Giving” to encourage sharing of health data for good

Posted November 16th, 2014 by

Napkin Notes Dad Garth Callaghan Joins Campaign Calling on People
to Donate Health Data Starting on Giving Tuesday

CAMBRIDGE, Mass. (November 17, 2014) – On December 2, PatientsLikeMe will launch a new campaign that will extend through the month and ask people to rethink their giving this year. PatientsLikeMe is calling on patients who are living with a chronic condition to donate their health data after donating to their favorite non-profit on Giving Tuesday.

The December campaign, officially branded “24 Days of Giving,” asks patients to simply share their health data for good. To do so, they can create a profile on PatientsLikeMe and start tracking their symptoms, treatments and quality of life. By sharing this data on the site, patients not only help themselves, but help others who can learn from their experiences, and advance research. “Our members have learned how to live better day-to-day and have contributed significantly to medical research,” said Michael Evers, PatientsLikeMe’s Executive Vice President of Marketing and Patient Advocacy. “We hope more will consider sharing their health data for their own, and the greater, good.”

At PatientsLikeMe, health data includes information about a disease or condition—how people live with it, what their doctors are doing to treat it, and what it’s like to navigate their health journey. The data are de-identified and shared with partners to help bring the patient voice to medical research, develop better clinical trials, and create new products and services that are more in tune with what patients experience and need.

Garth Callaghan, kidney cancer fighter and author of Napkin Notes, understands the importance of data for good in furthering clinical research and is an active PatientsLikeMe member. Garth has been diagnosed with cancer four times and may not live long enough to watch his daughter Emma graduate from high school. Rather than dwell on his diagnosis, Garth takes each day as a gift and a chance to connect with those he loves. He has fulfilled a promise he made to write 826 napkin notes so that Emma will have one for every day until she graduates high school. Garth uses PatientsLikeMe to share his data in the hope that others living with cancer can learn from his experience and help fight their own battles better.

“I keep my promise to Emma by sharing wisdom through my napkin notes, and I share my cancer stories online through PatientsLikeMe,” said Garth. “When I donate my data to an organization that can aggregate it and see a pattern or meaning, I’m not just helping myself, I’m helping all of the other people who are living with cancer, and their doctors.”

The “24 Days of Giving” campaign will be active across PatientsLikeMe’s Twitter and Facebook social media channels through December (#24DaysofGiving). Anyone can join PatientsLikeMe and share their experiences to help others while helping themselves. To learn more, go to www.patientslikeme.com.

About PatientsLikeMe
PatientsLikeMe® is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 300,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contacts
Margot Carlson Delogne
PatientsLikeMe
(781) 492-1039
mcdelogne@patientslikeme.com

Rachel St. Martin
Edelman
(646) 221-6933
Rachel.St.Martin@edelman.com


Give the gift of life on National Donor Day

Posted February 14th, 2014 by

Some of us might give our significant others and family members flowers and chocolates on Valentine’s Day, but did you know that February 14th is also National Donor Day? That’s right – in the spirit of love and giving, today is all about celebrating past donors and raising awareness for the five points of life: organs, tissues, marrow, platelets and blood.

There is an urgent need for donors in the world today. According to the U.S. Department of Health and Human Services…1

  • …every 10 minutes, a patient is added to the organ donor waiting list
  • …every day, an average of 18 patients die due to a shortage of available organs
  • …in 2010, there were 2.5 million deaths in the U.S. alone – imagine if all of them were organ donors, because…
  • …right now, there are more than enough people waiting for an organ to fill a large football stadium twice over

So, how can you help?  You can register to become an organ or tissue donor, or you can find a local blood or platelet drive and register for the Be The Match national bone marrow registry.

If you have received an organ donation – or are waiting for one – you can reach out to the transplant community at PatientsLikeMe and connect with members who have received heart, kidney, liver, lung or pancreas transplants, among many other types. You can also check out the extensive PatientVoice report on what life is like after a transplant and share your experience in the PatientsLikeMe transplant forums.


1 http://www.organdonor.gov/about/data.html