2 posts tagged “Donate”

5 Earth-friendly ideas for patients

Posted April 27th, 2018 by

As Earth Month winds down, explore some environmental pointers, including how to donate (gently used) wheelchairs, what to do with empty pill bottles (earbud/jewelry case, anyone?) and where to dispose of unused meds (April 28, 2018, happens to be National Prescription Drug Takeback Day at 5,000+ sites across the U.S… read on!).

1. Donate unused medical supplies. Before adding unused supplies or gently used equipment to your trash heap, see if they’re on the wishlist of organizations that accept medical surplus, such as InterVolMedshare and Project C.U.R.E. (click to see lists of what they’ll take).

InterVol’s general rules of thumb for donations?

  • Would you want the item/supplies used on you?
  • Does it have one year left before the expiration date, if it goes in the body?
  • Does the equipment function as intended (no broken or missing parts)?
  • Is the equipment in good shape (no rust, rips, tears, etc.)?

2. (Properly) hand over unused medications. Few organizations accept prescription drug donations from individuals, and drug donation and redistribution laws vary by state. Look into the regulations where you live and comment below if you know of any organizations that accept donated medications (such as Insulin for Life, which collects some insulin and diabetes supplies).

Note: This Saturday is National Prescription Drug Takeback Day (April 28, 2018, from 10 a.m. to 2 p.m.), sponsored by the U.S. Drug Enforcement Administration twice a year so that people can bring unused or expired medications to a local collection site for safe disposal (search for a site near you). In the last Takeback Day in October 2017, people dropped off 456 tons of drugs.

3. Safely dispose of unused drugs and medical waste on your own. Cancer.net offers these pointers for medication disposal: “If you decide to take the matter into your own hands, you should always follow the disposal instructions found on the drug label or the patient information leaflet that comes with the prescription. Do not flush medicines down the toilet or sink unless this information specifically tells you to.”

The U.S. Food and Drug Administration lists the few medications that should be flushed— but check with your local water treatment and/or sanitation department about any rules or regulations.

The U.S. Environmental Protection Agency offers this info on proper disposal of discarded needles, sharps and other medical waste. Wondering what to do with old oxygen tanks? See this guide.

4. Find new uses for empty pill bottles. An Indianapolis-based charity called The Malawi Project organized a hugely successful pill bottle collection drive to send the ubiquitous orange containers to the African country hit hard by HIV (where people were carrying their pills loose or wrapped in paper). After a million pill bottles quickly poured in, the organization stopped accepting donations — but they still encourage people look into other organizations still collecting them, or contact local animal shelters to see if they need them.

Recycle Nation says that few communities accept the orange (#5 plastic) pill bottles in their recycling programs, but a company called Preserve collects them at natural food stores across the country (check out this map) to use in their recycled plastic products. CVS Pharmacy is reportedly working on pill bottle recycling programs.

People have come up with lots of other creative ways to reuse or upcycle pill bottles — just a few neat ideas include:

  • “Hide-a-key” container (with a rock glued on top)
  • Earbud/headphone holder
  • Jewelry case
  • Mini sewing kit
  • Child-proof storage for quarters (for parking or laundry), pins, nails/screws, medical sharps or other small items

5. Go paperless with your insurance company and doctor’s office. Opt for electronic communication, if you’re comfortable with it. Many providers now offer email and/or text reminders rather than snail mail postcards or phone calls. Also, hospital gowns can be a drag for patients, and the paper ones contribute to medical waste. Depending on the medical setting and type of visit, ask your healthcare provider if it’s necessary to fully undress and wear a gown or use other (optional) disposable items for your visit.

Happy Earth Month!

Have any favorites from this list, or any “green” tips of your own to add? Join PatientsLikeMe to talk about topics like this and swap ideas with others.

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A New Year with Jamie Heywood

Posted January 10th, 2014 by

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It’s 2014, and it’s a significant year for PatientsLikeMe and our members. Later this year we’ll mark the 10th anniversary of our founding. As we reflect on where we’ve come from and where we’re going, there’s one thing that has never changed—our commitment to make sure your real-world experiences are a central part of improving healthcare. 

Changing medicine for the better is a journey. This year, we want all of you to join us on that journey, every step of the way. That’s why we’re starting a new initiative to get even more patient-reported data. Co-founder Jamie Heywood talks about the idea of data donation, and all the good it can do.

 

 

Wow, ten years. That’s a long time. What do you think are some of the most significant accomplishments of the last decade?

It’s been an amazing journey. We started this site so people, including my brother Stephen, could find information that helps them live better day-to-day and contribute data to research. We wanted to shake medicine up, to make it more about the patient, to help people connect with each other and see what their options were and take control of their health. At the heart of that has been this underlying goal to make patient experiences matter. We thought we could create a site that would make people happy with features like forums or condition trackers, but also allow them to contribute to research every time they logged in. When we started out, that had never been done before. We took a giant leap forward in validating patient-reported health outcomes when we announced the results of the lithium study in 2011, which showed the efficacy of lithium carbonate on ALS. That was the first time patient-reported data collected via a website was used to evaluate a treatment in real-time and to refute the results of a formal clinical trial. Since then, everything’s changed. Now we’re hearing more companies in the industry talk about the patient voice and the importance of listening to it. Together with our members, we’re making them focus on what matters most—the patients.

You’re talking a lot lately about “donating your data for good.” What’s that all about?

We created a kind of public service announcement for our members and the general public to showcase the good your health data can do – for you, for others, and for research. The more patient data we can get into the hands of researchers, the more we’ll learn about how to improve treatments and care. Every time you tell us how you’re doing, or add information about a symptom or treatment to your profile, or participate in a survey, you’re telling researchers what they need to know about what it’s like to live with a disease. I’d love to see every member update the information in their profile every week. If you can do that, we can really make a difference. If you don’t, we wait – we wait for more and more people to take part in research studies, one study at a time, year over year. Some people with some conditions don’t have time to wait. Some people don’t want to wait. I think we can change that, but it takes a village. We’re all in this together, and the only way anyone will learn more and really make an impact on healthcare is if everyone pitches in.

What impact has member-reported data had on research to date?
A tremendous impact! Our research team has published more than 40 publications in scientific journals using the data and experiences that members share on the site. We started in ALS and took the patient voice to the forefront in that disease, highlighting under-recognized symptoms and, with the help of an inspirational ALS patient named Cathy Wolf, upgrading the ALS measurement scale. In MS, we’ve had strong partnerships with pharmaceutical manufacturers to help them develop better products and services that have been informed by patients. For conditions like fibromyalgia, mood disorders, and HIV, we have published findings on how the support of patients like you can have a therapeutic effect on improving outcomes. In epilepsy, we found that members who have made more friends on the site see better clinical outcomes, too. And we’ve helped change healthcare policy working with the Institute of Medicine (IOM) and many other government entities. All of this fantastic work was made possible by the active engagement of our patients, the data they make available on their profiles, and their willingness to share openly to benefit one another.

What is your ultimate vision of what patient-reported data can do?

I think of PatientsLikeMe as a dynamic learning system, one that can learn in real-time from the experience of every patient in the world. We want that system to be with you as you and your doctor talk about your treatment plan, to give you the most current data to help you understand where you are in your illness, to draw on other patients’ experiences so that you can create the best path forward based on your goals. That’s the impact patient-reported data can have on every patient’s life, and why we need to get as much of it as possible.