Much has changed over the last 20 years for people with cancer. Pat Elliott describes how far things have come for patients while also shedding light on how more improvements are still necessary. With Pat?s permission, I am excerpting an email she shared with Brad Tritle who is one of my co-editors on the upcoming HIMSS book ?Engage! Transforming Health Care Through Digital Patient Engagement?. The following is a brief profile of Pat:
In her email, she outlined the dramatic improvements she?s experienced with her recent experience. It?s striking that virtually all of the improvements have come from sources outside the healthcare systems. Astute healthcare leaders recognize that the next wave of improvements can and should come from the healthcare providers themselves. Those leaders will gain a major advantage if they adapt (see Xboxification of Healthcare?and Healthcare?s Age of Agility?for ideas on fostering innovation). Here?s how Pat describes the differences (most good, a few not so great)?
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As I was thinking about my own experiences, and the way healthcare professionals treat patients, I realized that most seem to think we are still in the model that existed with my first cancer diagnosis ? a time when patients did what they were told and didn?t have other resources for information or support. E-Patient Dave calls that the car wash approach ? you go on the?conveyor?belt and get shoved through, with everything happening to you as you are passively moved along. It?s a good description.
With the second cancer I have had access to information and resources, through the Internet, that enabled me to understand my cancer and treatment options, get the follow-up information needed to recover and move forward, avoid medical mistakes, feel less isolated even though what I had was very rare (many CML patients have never met another human being with CML) and, generally, all of these things supported the healing process and a return to more of a normal life. A cost analysis would likely also show this has a cost savings benefit for the healthcare system too.
Differences with the second diagnosis include:
- Immediate ability to research the diagnosis, treatment and prognosis online from reputable sources. Current info. Books go out of date within months.
- Ability to check out a computer in the hospital and do immediate follow up, real time, on the information provided, tests scheduled, etc.
- Easily built a website (Caring Bridge) as a communications tool/relieved tremendous stress and burdens at a critical time
- Ability to tap into a site (Lotsa Helping Hands) with online tools to schedule and set up patient support
- Used a Google Group for friends to organize food support, deliveries, meals, etc.
- Providers were focused mainly on clinical aspects. Most of the information needed to process the diagnosis and live with the disease/treatment came from other patients. This gap causes a distrust of the providers and makes the information from fellow patients seem more credible.
- Providers ? and the marketing firms after their business ? act like social media is new. Patients have been online since the bulletin board days, before social media even had a name. Some patient communities have existed for decades, have highly credible leadership, and offer real world information. ACOR.
- New communities spring up organically through Yahoo and Google Groups and orchestrated health website platforms.
- Able to attend virtual educational programs online with world class experts in my disease, with people from around the world.
- Able to go far beyond consumer media and access clinical journals thru basic tools (journals, Google Scholar) and sites that aggregate the data (Medify)
- Because my leukemia is rare, and the treatment is new and cutting edge, it?s difficult to find a true expert. When I ran into issues I was able to reach world class experts, at no cost, through an online portal run by a nonprofit advocacy organization, to get expert advice on a medical opinion I got in Phoenix which seemed off track. The local specialist aggressively tried to push me into a transplant that I did not need. I was able to get accurate information to take back to my primary oncologist and discuss with him the course of treatment I wanted and why and back it up with clinical data. To make a long story short I achieved the best possible clinical outcome within the optimal timeframe to give me a normal lifespan, living a good life and in good health. I avoided having a transplant I did not need that had a good chance of killing me or leaving me very ill afterwards while bankrupting me. None of that would have been possible in the old days. Most examples of patient empowerment are not that dramatic, but the key thing is that empowerment is about taking responsibility for your own health and well-being, in partnership with the right medical experts.
- Have run into both pluses and minuses with electronic medical records, system still very fragmented. BUT have no records at all from first cancer.
- Encounter very sophisticated scammers with websites, social media platforms selling fraudulent cures, information, etc. Done so well that it would be easy to fool many consumers, especially people who are desperate.
- Cookies ? label you as a patient, impact the ads you see, lead to things like ads for fraudulent drug sales sites claiming lower pricing ? no one regulating this
- Mobile apps ? Marketers keep pushing as the next big thing ? Reality is that those most in need of support are being missed. Due to age/computer literacy/inability to afford a mobile device. Some cancer apps, for example, only come in mobile versions.
- Privacy ? old days you could keep things private. Today it?s all searchable. Forces younger people into the closet, cuts off access to support resources. Beyond that, some sites claiming to be patient support sites are data mining sites. Needs oversight and protections.
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