Engagement For Seniors

As the healthcare industry moves towards a more patient-centered model, they cannot forget about the fastest growing segment of our population, the older adults. According to the US Census Bureau, 72 million Americans will be 65 or older by 2030. With this growing and aging population, how can offices, hospitals, and healthcare professionals engage seniors? It’s no secret that engaging people in their own health care, especially through shared medical decision making, results in improved health outcomes, improved patient satisfaction, and cost savings. Below are several examples for how senior engagement can be achieved.

Clarify medical communication

With age comes the natural decline of hearing and seeing, so keeping educational tools more visual and basic is crucial. That coupled with avoiding medical jargon will help older patients become more engaged. According to Solution Reach, keeping it simple is best:

“Although the senior community desires to be more technologically savvy, they are often still learning; they require guidance to catch up to the knowledge and experience of the younger generation. It may seem obvious, but sticking to the basics will ensure that landing pages, advertisements, emails, and other promotional materials are easy to read and understand.”

Engage beyond the office

Going beyond the doctor’s office and utilizing digital technology has been proven to improve the patient experience, such as follow-up prescriptions/appointments, treatment discussions, access to EHRs, and medical reminders. Capstrat highlights adherence problems (i.e. taking medications, exercising, following a specific diet, attending therapy, etc) as a main problem that gets worse with age. Reminders, tips, or motivation via email, snail mail, or social media can help to combat these issues. Understanding and honoring their preferred means of communication is one of the first steps. However, healthcare professionals should still realize they have the same ethical responsibility with these methods as they do in the office.

Don’t forget the caregiver

The need to include the patient’s caregiver is essential for older adults. The caregivers are often times the children of the patient and are the ones handling the finances, medications, transportation to appointments, etc. The caregivers spend a substantial time with the patient, while the doctors and other HCPs time is limited, demonstrating this need to include them. Capstrat suggests incorporating them by adding caregiver contact information onto new-patient forms online and offline, and sending treatment information directly to the caregiver.

Utilize technology

According to Welltok’s Senior Health and Technology Survey, more than 50% of seniors use tech to improve health. This survey also pointed out that most seniors do not use wearable, but would be willing to use a health program accessible on a computer or mobile if recommended by a doctor. What does this mean? Older patients are relatively tech-savvy and are looking for resources that are both useful and useable.

Organize resources

Keeping track, organized, and up to date on all your medical records is a big undertaking. According to MedCity News:

“… there are a lot of resources available from AARP, Medicare, retail pharmacy programs, but it is a lot to manage and navigate. Seniors need help organizing everything they need to accomplish their goals in one place. This population requires a consumer-designed platform offering a single channel for presenting benefit, health-related and other resources to support them.”

The senior population is an expanding group with their own specific needs for engaging in their healthcare. Healthcare entities would be wise to understand, honor, and cater to those needs.

For those older adults that don’t quite have it all figured out yet, Patient Empowerment Network is excited to launch its first Digital Sherpa Workshop this fall in Florida with the hopes of expansion in the future. This workshop is designed to parter the tech-savvy, college students with the not so tech-savvy, older patients with each other for tips and tricks on how to navigate the internet and social media to better their healthcare. Sherpa Logo





The New Version of “The Fantastic Voyage”

In 1966, a science fiction film was released about a team of scientists who shrank themselves into molecular sized particles in order to heal a colleague from withinAG his body. Crazy, no?

Well, since then, we’ve seen the development of nanotechnology, a new tool where disease fighting mechanisms are released into the body. Their size? About 100 to 10,000 times smaller than human cells. These smart little machines travel through a patient’s body to the site of a particular problem. Not surprisingly, a very big use of nanotechnology is in the diagnosis and treatment of cancer.

Nanotechnology and cancer detection and treatment is a match that, in the past, was only imaginable in science fiction. Cancer initially happens in formerly undetectable ways at a molecular level. Nanotechnology has the capacity to rapidly detect cancer-causing cells, also at the molecular level. Through the application of molecular contrast agents, nanotechnology can not only detect changes in cells potentially leading to cancer, but can also monitor treatment to ensure that a cancer patient is receiving the correct medicine. Understanding and treating cancer on such a profoundly targeted area of the body can also lead to greater development of individualized therapies.

At this point, most cancer patients receive some combination of surgery, radiation, and chemotherapy, all of which can have distressing side effects. The promise of nanotechnology is that the field of targeted treatment, already in process, can be accelerated even more. And as early detection is one significant tool in cancer treatment and cure, nanotechnology can certainly be an important tool in that arena.

How available is nanotechnology for the average cancer patient? Several new nanotechnology drugs have passed the clinical trial stage and are on the market, including Doxil® and Abraxane®. Doxil® has been approved in treatment of AIDS-related Kaposi’s sarcoma, breast cancer, ovarian cancer, and other solid tumors. Abraxane® is being used in the treatment of advanced breast cancer, advanced non-small lung cancer, and advanced pancreatic cancer. Many other nanotechnologies are in the pipeline as well.

Chalk one up for science fiction predicting real life inventions! I’m still waiting for the transporter myself.







How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News

Ben Goldacre writing in Bad Science classified science reporting as falling into three categories – wacky stories, scare stories and breakthrough stories; the last of which he views as ”a more subtly destructive category of science story”. Whether you get your news through digital or traditional means, you can’t fail to notice the regularity with which journalists report on the latest medical breakthroughs. Some of these reports are sensationalist (“coffee causes cancer”) and fairly easy to dismiss; but do you know how to separate fact from fiction when it comes to less sensationalist headlines?

The foundation of empowered patient-hood is built on reliable health information. This means not only knowing where to find medical information, but being able to evaluate it and knowing how it can be applied to your own, or your loved-ones’ particular circumstances. Headlines often mislead people into thinking a certain substance or activity will prevent or cure chronic disease. As patient advocates we must learn to read beyond the headlines to filter out the good, the bad, and the questionable. The following questions are designed to help sort the signal from the noise next time you read the latest news story heralding a medical breakthrough.

1. Does the article support its claims with scientific research?

Your first concern should be the research behind the news article. If an article contains no link to scientific research to support its claims, then be very wary about treating those claims as scientifically credible.

2. What is the original source of the article?

If the article cites scientific research you should still treat the findings with caution. Always consider the source. Find out where the study was done. Who paid for and conducted the study? Is there a potential conflict of interest?

3. Does the article contain expert commentary to back up claims?

Look for expert independent commentary from doctors or other healthcare providers to explain the findings (there should be an independent expert source quoted – someone not directly connected with the research).

4. Is this a conference presentation?

Journalists frequently report on research presented at large scientific meetings. It’s important to realize that this research may only be at a preliminary stage and may not fulfill its early promise.

5. What kind of clinical trial is being reported on?

If the news relates to results from a clinical trial, it’s important you understand how, or even if, the results apply to you. Quite often, news publications report on trials which have not yet been conducted on humans. Many drugs that show promising results in animals don’t work in humans. Cancer.Net and American Cancer Society have useful guides to understanding the format of cancer research studies.

6. What stage is the trial at?

Research studies must go through several phases before a treatment can be considered safe and effective; but many times journalists report on early phase trials as if these hold all the answers. The testing process in humans is divided into several phases:

  •  Phase I trials: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
  • Phase II trials: The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety.
  • Phase III trials: The drug or treatment is given to large groups of people to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.

Source: ClinicalTrials.gov

7. How many people did the research study include?

In general, the larger a study the more you can trust its results. Small studies may miss important differences because they lack statistical power.

8. Did the study include a control group?

A control group allows researchers to compare outcomes in those who receive a treatment with those who don’t. The gold standard is a “randomised controlled trial”, a study in which participants are randomly allocated to receive (or not receive) a particular intervention (e.g. a treatment or a placebo).

9. What are the study’s limitations?

Many news stories fail to point out the limitations of the evidence. The limitations of a study are the shortcomings, conditions or influences that cannot be controlled by the researcher. Any limitations that might influence the results should be mentioned in the study’s findings, so always read the original study where possible.

Useful Resources

  • Gary Schweitzer’s Health News Review website provides many useful resources to help you determine the trustworthiness of medical news. To date, it has reviewed more than 1,000 news stories concerning claims made for treatments, tests, products and procedures.
  • Sense about Science works with scientists and members of the public to equip people to make sense of science and evidence. It responds to hundreds of requests for independent advice and questions on scientific evidence each year.
  • Trust It or Trash is a tool to help you think critically about the quality of health information (including websites, handouts, booklets, etc.).
  • Understanding Health Research (UHR) is a free service created with the intention of helping people better understand health research in context. It gives clear and understandable explanations of important considerations like sampling, bias, uncertainty and replicability.

Spotlight on: MPN Cancer Connection (MPN-CC)

Interview with David Wallace, publisher of PVReporter, founder of MPN Cancer Connection (MPN-CC), and PEN Advisory Board Member. In this interview, David explains why he started a non-profit, his goals, and some of the obstacles he has faced so far.


Why did you decide to create MPN Cancer Connection (MPN-CC)?


MPN Cancer Connection was launched as a non-profit in 2015 to provide a channel for generating financial support for PV Reporter. To fully advance our cause, primarily patient education and advocacy and make it sustainable, financial support would be a necessity. The website and associated expenses were run 98% out of pocket for 2 ½ years. I also felt it was important to promote MPN awareness as a cancer, providing patients benefits and programs that would not otherwise be available.


How did you decide on the non-profit route?


The non-profit route looked like the best logical solution to our financial issues. I had several potential donors, mention they would be willing to help out if the benefits of a tax deductible donation were available. I was also more comfortable pursuing sponsorship, partnerships and other projects by going the 501©(3) route. Somehow, I believed if I chose this direction, it would lead to success. Early indications are moving the needle in the green zone.


When starting PV Reporter and MPN-CC, what were your goals for both organizations?


That’s a great question. For PV Reporter I had several goals in mind. First of all I wanted to create a website with “easy access” to pertinent information on MPN’s, in an easy to navigate format. The website was built around the “custom MPN search engine,” MPN Search. I wanted the articles to be “patient friendly,” easy to read and understand without having to search for definitions to complex terminology. I also discovered an opportunity to “share the pulse” on topics of interest I found frequently discussed in the Facebook forums. I had no idea PV Reporter would take off like it has running into the 3rd year in August 2016.

The Five Year Vision for MPN-CC can be found on our website.


What are some of the obstacles you faced when starting MPN-CC?


The biggest obstacles were funding and “know how” to start a non-profit. My first call was to an attorney who wanted $5000 to assist on the paperwork. That was rather dejecting (that’s putting it mildly), but I kept looking for affordable assistance. I was fortunate to find a super nice lady, Julie, who runs a nonprofit consulting firm, profiled in one of our small local newspapers. After our first meeting at a nearby coffee shop, I knew she was the mentor I needed. She believed in me, my cause and understood the benefit I was providing patients through PV Reporter. Without her guidance in walking me through the tedious paperwork process, I might have thrown in the towel.

Over the last year and half, I attended two non-profit conferences. This offered a great learning experience and opportunity to network. Learning to run a non-profit while keeping PV Reporter on the leading edge has been a major challenge.


How do you fund your non-profit?


A very loyal PV Reporter reader from the early days came in with a generous donation that helped cover some of my initial costs and provided the motivation I needed to know I was on the right path. Several friends/patients have also shown their support as well. I am most appreciative, as they were the cornerstone that provided the means to keep my projects moving forward.

In July 2016, I landed an advertising sponsorship on PV Reporter that should ease the funding burden for a while, allowing me to create new patient resources and programs. I also intend to seek additional sponsors, grant opportunities and other sources of funding.


What have I learned from creating PV Reporter and MPN-CC?


First of all, I found myself in a role that was totally new as a patient leader/advocate. I realized how much I learned from other patients over the years and how important it is to give back to the MPN community.

Cultivating a supportive core group of fellow patients and partners were instrumental to the success of PV Reporter and MPN-CC.


What are your near-term goals?


I have a number of them; the most basic is continued existence of both organizations. One of the most important goals is for me to connect with knowledgeable individuals in the non-profit space in order to outsource certain responsibilities. Bookkeeping was the first area I took on help with. Lord knows, I have enough to learn and becoming a QuickBooks expert was not high on my list.

I recently started a project with a non-profit consultant who is helping me put the pieces in place for growth and sustainability. If things go according to plan, I believe we will accomplish our goals and be able to expand our reach.