Executive Summary Introduction
The European Patients Forum (EPF) commissioned this report to give an overview of the role of patient organisations in Europe, to highlight their value as legitimate stakeholders in civil dialogue in health-related policies and to draw attention to the challenges patient organisations are facing. The objective of The Added Value of Patient Organisations is to emphasise the contribution of patient organisations in representing and voicing the situation of a speci c population that would otherwise not be represented. The main activities of patient organisations are set out in four different areas: policy, capacity- building and education, peer support and research and development (both health and pharmaceutical).
Patient organisations are invaluable partners in the policy process, providing input through stakeholder advisory groups, expert panels, European and/or national government public consultations or institutional meetings. Patient organisations are able to help policy-makers understand the experience of living with a disease or a condition. They use this “end-user perspective” to promote the interests of patients at all stages of policy development and in a range of institutional settings. Their contributions are valuable from the cross-sectoral approach of Health in all Policies (HiAP) to health and other essential services design. Through representation, mobilisation and empowerment, patient groups combine individual and social actions to gain political commitment and public support for speci c patient and general population health issues. They are experts in channeling the voice of patients by representing patients’ interests in a united, coherent and consistent way which enhances the overall balance and nuance in policy- making.
Capacity Building and Education
Patient organisations work to strengthen the organisational and governance structures of their constituencies with the aim of helping patient groups become more resilient, sustainable and effective. Patient organisations also invest in capacity-building for policy-makers, industry, academia and the media. They undertake educational initiatives to disseminate information from end- users to policy-makers and authorities and vice-versa, as well as between different stakeholders. They work to promote health literacy to help patients make sound health care decisions for themselves. They produce and review health-related information with the aim of making sure that information provided to patients is of high quality and accessible.
Patient organisations provide peer mentoring, counseling or listening services, and legal and financial support. In their role as peer supporters they co-deliver self-management education and deliver various forms of support into the wider patient community.
Research and Development: Health and Pharmaceuticals
Patient organisations are increasingly active research collaborators, including through setting of research priorities and data collection. They are avid advocates for greater involvement of patients in the early stages of pharmaceutical research and development, as well as Health Technology Assessment (HTA), and argue for a similar approach in research and the development of disruptive innovation. They help patients navigate the complexities of the regulatory process for medicines and raise awareness about this with the pharmaceutical industry.
Patient organisations face many challenges when performing these activities. The lack of resources and funding is an ongoing problem in all areas of their work. There is also an overarching issue of credibility impacted by the professionalisation of the sector that can disconnect it from its base and threaten its representativeness. Furthermore, there is a systemic failure of cooperation and a culture and tradition of tokenism when it comes to working with patient organisations. A regulated and coherent legislative space that would ensure a right of access to independent, timely and adequate resources is also missing on the European level. This means that the contribution of patient organisations to health (and society) in Europe is potentially greater than it is today.
Patient organisations need to keep their eyes on the future by focusing on their core principles: those of representing, mobilising and empowering patients and advocating for their rights. They could consider ways to educate external stakeholders about what they do, the signi cance of the added value that they bring, and why and how they work with industry partners. They can use the revolution in communications, technology, innovation, research and development to advance their connectivity, engagement and resilience in a changing world. But patient organisations cannot face these challenges alone: other actors have an important role to play as well. The following recommendations can be taken into account by other stakeholders.
What is a patient organisation?
Values and activities of patient organisations
Challenges for patient organisations
Conclusions and key messages
Editor’s Note… On November 22, 2017, Sharyn B (Gold Coast, Queensland, Australia) posted the following message to the PRP Facebook Community. Members can CLICK HERE see the original, unedited version of Sharyn’s post and feedback.
“I’ve been told to moisturise at least three times a day. I don’t shower everyday (which is excruciating as i love I love my morning wake up shower). The problem I have now is the moisturiser is caking itself on me and I can’t get it if off with the Cetaphil cleanser I’m using. Any tricks or tips?” Here is the feedback she received.
Steven C — Glenrothes, Scotland, UK
Vivienne P — Australia
I found being constantly covered in moisturizer was a positive. Showers dried out my skin and I dreaded them. I used products called Dermol 500 and Zerobase Emollient Cream which are also antibacterial.
Sharyn B — Gold Coast, Queensland, Australia
The moisturiser makes me feel better. It’s the covering left over that I can’t get off to begin again freshly,
Gail C — Virginia Beach, VA
I found just the opposite. Shower for at least 15 minutes, BUT DONT DRY OFF! Apply moisturizer while still wet. It helps immensely
Tonya G — McDonough, GA
Same for me. I showered everyday, warm not hot, short 10 minutes, then Aquaphor all over. Sometimes I’d shower morning and evening during the worst of it. Helped greatly.
Gail C — Virginia Beach, VA
Even though Aquaphor is the nastiest stuff, it sure was a lifesaver for me!
Teri R — Ft. Wayne, IN
Are you wet when you put your clothes on then?
Gail C — Virginia Beach, VA
No. By then I am just damp. Oh, another tip. Go to thrift stores and buy clothes that are too big for you. Wash them before you put them on. The goop we put on our skin will ruin any good clothes you have. But you won’t mind throwing away clothes you pay very little for.
Jean N — Boston, MA
I use CeraVe Moisturizer. I don’t dry off. I apply the moisturizer while I am still wet.
Ginny M — Lexington, SC
Shower! You need to get the old dead skin off. We shower twice a day when we flare. Do not let it cake up. (Editor’s Note: When Ginny says “We” she refers to herself and her three children, all diagnosed with juvenile onset PRP.)
Jan T — Ringwood, NJ
Mineral oil/baby oil helps remove stickier ointments like Aquaphor. When I cut back on baths and showers (which helped my itching immensely), I also switched to less greasy lotions. I could wash them off with a washcloth or sponge bath.
Pam M — Calgary, Alberta, Canada
I resorted to using a back reaching shower brush. Use it gently all over while in the shower.. Then pat dry and apply moisturizer liberally.
Derrick S — Oak Hills, CA
This thread is a PERFECT example of the PRP problem. No two of us are the same. We just guess at what works. If a shower doesn’t hurt or bother you then do it. If you like to moisturize then do that. In short, if it makes you feel better, do it. I personally think this thing runs its course and you should do what ever you like to be as comfortable as you can during the ride.
Jan T — Ringwood, NJ
That’s basically what my nurse told me.
I sponge bath daily and shower once a week mostly to wash my hair. I use Dermasil lotion, mainly because it has lanolin in it. I had a lot of fissures when this all started and I used lanolin for them. I was hoping the lanolin would help keep them away. Dermasil doesn’t have buildup and I used it twice a day in the beginning and now only once a day unless I feel dry or a lot of itching because of being dry. I have the lotion in my car too.
Lorna R — Eugene, OR
I took two showers a day, moisturized well after each one. I do not agree with this no bathing for days on end. Skin, body cream build up, it stinks and it is uncomfortable. Take those showers, do what makes you feel good. This is all about comfort levels. I shampoo’d twice a day too.
Ellen H — Rome, GA
I can’t imagine if I had not bathed everyday what it would have been like, When I would shower everyday I could just rub skin off my body. This is some high maintence stuff
Tierney R — Virginia Beach, VA
I just took a shower on Monday, my first and only one in a month. I did NOT stink. My husband gets very close to me and tells me I do not stink, nor do I smell bad. Showering dries my skin out and is one of the reasons I take pain medicine. I believe showering robs the body of its natural oils. Putting lotion on does me no good, it’s more like a glue that holds the flakes down. We’re not all alike.
I agree with every word you said, Tierney. And it’s It’s exhausting just a sponge bath with no soap. Just to wipe a little dust off and add a little moisture layer under the “glue”.
Sharyn B — Gold Coast, Queensland, Australia
Thank you Lorna. I do so enjoy my shower it actually takes my mind of all my woes for a short time
Tasha G — Corvallis, OR
I also bathed twice a day during my acute phase and found it so soothing, both physically and mentally. I have never been a long shower person, but just couldn’t resist when life was super hard due to PRP. I also found Epsom salt baths really helped with the itch. I say do what works best for you and be open to exploring various options. The thing about PRP is that it constantly changes, so what works today may not work tomorrow.
My grandmother is having a bad flare up. I have been helping her shower and lathering her up with a psoriasis tar coal shampoo all over her body. Then we moisturize before her skin is fully dry. It stops the burning and severe itching. This condition is slowing killing her. It is so hard to see.
Teri R — Ft. Wayne, IN
How do you put lotion on places you can’t reach on your back?
Gail C — Virginia Beach, VA
Get a small paint roller with removable rollers. And a two-foot handle. Put a healthy glob on your back and roll it all over
Derrick S — Oak Hills, CA
That’s a brilliant idea Gail. Likely less irritating to the skin than rubbing it on.
When moisturizers cake
The Autoinflammatory Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases. The PRP Survival Guide has signed up for the Autoinflammatory Alliance newsletter.
LEARN MORE about Autoinflammatory Alliance
Should the PRPA join the Autoinflammatory Alliance?
From the Editor…
If pityriasis rubra pilaris is, in fact, an autoimmune disease, then joining the American Autoimmune Related Diseases Association would seem like an appropriate path forward. It was on this basis that I approached the AARDA in 2015 intent upon having the PRP Alliance become a member organization. It became clear, however, that it was the view of ARRDA that PRP was NOT an autoimmune disease. It should be noted that the National Psoriasis Foundation agrees.
According to the AARDA…
“The American Autoimmune Related Diseases Association is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical, and efficient manner.
“AARDA is the only national nonprofit health agency dedicated to bringing a comprehensive focus to autoimmunity, the major cause of over 100 serious chronic diseases. Approximately 50 million Americans — or one in five people — suffer from autoimmune diseases. Women are more likely than men to be affected; some estimates say 75% of those affected are women. Still, autoimmunity is rarely discussed as a women’s health issue.
“An autoimmune disease develops when a person’s immune system mistakenly identifies healthy cells as foreign cells and attacks them. There are over 100 known autoimmune diseases. Most of these are known by their singular names, but the public is generally unaware of their autoimmune nature. This makes it difficult to raise awareness of autoimmune diseases as a whole.
Many people also confuse the term autoimmune with acquired immune deficiency syndrome (AIDS), or they think these diseases are a form of cancer.
Editor’s Note: Skin disorders considered to be autoimmune include:
✽ Psoriatic arthritis
✽ Bechet’s disease
✽ Bullous pemphigoid
✽ Dermatitis herpetiforms
✽ Lichen planus
✽ Lichen sclerosus
✽ Psoriatic arthritis
The mid-November issue of the PRP community newsletter was just emailed to 1,009 PRP patients/caregivers. If you didn’t receive an email from me, then (1) you either don’t have your email address listed in the PRP Community Database, (2) or the email address we have is undeliverable, or the newsletter ended up in “junk mail”.
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It took 3 days and 16 people to raise $1,225, enough to pay for the Rare Skin Disease Referral Initiative’s initial mailing of “advocacy packets” to 88 teaching hospitals in the U.S. Bravo to all.
The PRP Alliance needs another group of PRP patients and caregivers to step up for the most important project of 2018: paying for vital technology that will help us further our goals. This technology is provided by Constant Contact, which charges the PRP Alliance $74.62 each month. Our immediate fundraising goal is $895.44.
The PRP Worldwide Census began on November 1, 2017. We have already spread the word to 1,610 adults and children within the PRP community
❋ PRP Facebook Support Group: 1,099 members
❋ PRP Community on RareConnect: 233 members
❋ PRP Community Newsletter Email List: 1,047
As a result, we were able to confirm “core data” for 63 people diagnosed with PRP including, e.g., name, location, onset date, onset age, misdiagnoses, biopsy history, diagnosis date and current status (active vs. remission).
To some the response may be disappointing. Four years ago when the first PRP Worldwide Census was launched on November 1, 2013, it took over six months to confirm “core data” for 500 PRP patients. Based on that experience, the current effort is scheduled to continue through October 31, 2018.
Our year-long effort will be made possible using the technology provided by Constant Contact that includes:
❋ Platform to produce the monthly newsletter
❋ Mailing list management (over 1,000 email addresses)
❋ Management of the PRP Worldwide Census responses
Click Here to donate to the
2017-18 PRP Worldwide Census effort
Have you received a genetic diagnosis?
Now is the time to GET DIAGNOSED and join FIRST in playing an important role in ichthyosis research. FIRST is co-sponsoring a transformational scientific endeavor with one of the world’s leading institutions in ichthyosis research, Yale University. We encourage you to take part. The National Registry for Ichthyosis & Related Skin Disorders, “The Registry,’ is available to investigators worldwide, and is the largest resource of ichthyosis patient information – critical data that holds the key to better, more targeted treatments, and eventual cures. The Registry, co-sponsored by FIRST is the next evolution of ichthyosis research.
Now is the time to get diagnosed, join The Registry and the new GENEration, and play your part in unlocking the future of ichthyosis research. Find out more at National Registry for Ichthyosis and Related Skin Disorders Frequently Asked Questions. Or, to participate, please email the Registry’s Patient Coordinator Theodore Zaki at firstname.lastname@example.org or call the Yale lab at (203) 785-5364. It’s a simple process and does not require traveling to Yale. A member of the team will promptly respond.
Frequently Asked Questions
What is a Registry?
People living with a rare disease are a critical component of the research process. Without patients and families voluntarily providing detailed insights into their rare disease, researchers may be missing information that is vital to unlocking scientific puzzles that may lead to new treatments. In the rare disease community, patient registries are especially valuable to gather this critical information because in most cases, very little is known about a particular condition.
The purpose of The Registry is to enroll people with ichthyosis to characterize their specific type of ichthyosis using defined descriptions, and to collect information about enrollees in order to advance understanding of the diagnosis, causes, and treatment of the disorders.
How can pityriasis rubra pilaris (PRP) be included in the Ichthyosis Registry? How does Yale reconcile the fact that pityriasis rubra pilaris is NOT ichthyosis. Pityriasis rubra pilaris (L44.0) is an autoinflammatory disorder that falls under ICD-10 L00-L99: Diseases of the skin and subcutaneous tissue. In contrast, ichthyosis appears under ICD-10 Q00-Q99: Congenital malformations, deformations and chromosomal abnormalities.
How is FIRST involved?
FIRST plays a pivotal role in The Registry. As a co-sponsor, FIRST is providing support and resources to ensure The Registry is managed, sustained, and utilized to its fullest capability. FIRST resources will support the principal investigator of The Registry, Dr. Keith Choate, and many of the functions in his laboratory at Yale University. FIRST will also allocate resources to encourage our members to enroll in The Registry and receive a genetic diagnosis. FIRST will also support outreach to research investigators and health organizations who specialize in ichthyosis and related skin types, to utilize The Registry’s many benefits.
Why enroll in this registry?
A registry is the cornerstone to research. Investigators working within a certain track of medical research will have access to the patient data they need to experiment, discover, and achieve medical breakthroughs. Without patient registries, the process of scientific discovery in medical treatments can be slowed, halted, or even dismissed. Studies of these disorders may take years to finish, however if a cause is found, investigators may be able to develop better tests and treatments in the future. Participating in a registry is one of the most direct ways to participate in the future treatment and possible cures for your skin disorder.
What if I already enrolled in the Yale Disorders of Keratinization Research Project, can they use my information for The Registry?
Yes, however your file may need to be updated or more information may be needed. When contacting Yale for more information, be sure to inform them when you were tested and/or diagnosed.
Who can access The Registry?
Investigators from universities or pharmaceutical companies interested in ichthyosis can make an application to the registry. If the proposed study has appropriate protection for human subjects and is approved by the registry advisory committee, investigators will be permitted to contact enrollees to inform them of the study opportunity. Participation in future studies is optional and you can choose which, if any, studies to join. Your information will not be transferred to these investigators. The Registry will function solely to inform you of studies relevant to your skin condition.
If I have a diagnosis from another laboratory or institution, should I still participate in the Registry?
Yes. When contacting Yale for more information, be sure to inform them of where, when, and with whom you were diagnosed.
What does it cost to get diagnosed and be part of the registry?
There is no cost for participating in The Registry. If you do not already have a laboratory diagnosis, Dr. Choate’s lab will perform the DNA testing under his research funding at no cost to you/your insurance.
Do I need to travel to Yale University to participate?
We will work with you/your physician to obtain all relevant medical records and consents via email or fax. Any costs of shipping will be covered by us.
How do I get diagnosed and join The Registry?
To participate, please email the Registry’s Patient Coordinator – Theodore Zaki, email@example.com or call the Yale lab at (203) 785-5364. It’s a simple process and does not require traveling to Yale. A member of the team will promptly respond.
Welcome to the ReadyTalk Meet & Greet Scheduler. The PRP Alliance has arranged for a 14-day Free Trial of ReadyTalk, a video conferencing platform similar to GoToMeeting but more user friendly. The plan is to facilitate online gatherings where PRP patients and caregivers can meet, greet and chat. Based on the response, we ill schedule additional PRP ReadyTalks in December. The objective is to evaluate ReadyTalk as an ongoing communication tool for the PRP Community during 2018. If you would like to host a ReadyTalk Meet & Greet, simply follow the three steps below. Each two-hour ReadyTalk Meet & Greet will be supported by a fellow PRP patient or caregiver.
Step 1: Select a day
Step 2: Select a time for YOUR ReadyTalk Meet & Greet. Use the Time Zone Converter to confirm YOUR TIME versus DALLAS, TX time. All times listed below are Central Time (Dallas, TX)
Step 3: Send an email to bill.mccue@prpAlliance.org and include:
✽ Your name, e.g., Bill McCue
✽ Title, e.g., Welcome to PRP ReadyTalk
✽ Date: December 2, 2017
✽ Time: Saturday: 8 AM to 10 AM
PRP Ready Talk Schedule
SATURDAY, DECEMBER 25
✔︎ 8 AM – 10 AM: Bill McCue — Welcome to PRP ReadyTalk
✔︎ 4 PM -6 PM: Bill McCue — Welcome to PRP ReadyTalk