UNC Lineberger cancer center image

Sarah's Engagement Monday Question

Sarah Goodsen asked a great question on LinkedIn.

Happy Engagement Monday!
The last 2 years have taught us so much. We have learned new innovative things to do and have undoubtedly learned things to not do. A patient’s experience during COVID quickly became a hot topic. We saw complaints of no visitors, lack of communication, isolations and staff burnout. We as healthcare professionals saw an increase of focus on our professional community, recognition and support. As we hope this is the light at the end of the tunnel, what should be our biggest focus? Should we be investing more in patient experience in our organizations? Should we be re-evaluating our structure in terms of operations ( hours worked for staff, restructuring, better training), should we be investing more in our employees ( better benefits, flexibility, pay) or is it a bigger investment in technology?

  • PX Patient Advocacy
  • Resctructure Operations
  • Invest More In Employees

Fixing Healthcare - A Patient's Perspective

Sarah asks the right questions. As a patient and an entrepreneur, I may see the issues differently. The question every company, website, and organization must figure out is how to move from creators to curators and collaborators. The more meaningful, sustaining, rewarding, and profitable we become, the faster our content, websites, and marketing create community, collaborations, and contributions. Creating community is HARD. Creating a community in healthcare is harder.

My healthcare organizations (UNC, Duke, Ohio State) don't know how to ask for or use my (patient) feedback. Patient advocacy needs two kinds of feedback - small group advocacy and statistical stories.

Patient Advocacy in Small Groups

I was part of a group of patients providing feedback to UNC Lineberger. My feedback wasn't needed, used, or important. After several meetings, the purpose was clear - our group existed as a checkbox. The interaction was pro forma or Kabuki Theater. UNC could say they cared about patient advocacy. Small group collaboration without patient stories transformed into statistics is philosophy, not management, not effective collaboration.

AI Magic Statistical Stories

In UNC's defense, small group patient advocacy cannot work until a hospital or provider transforms patient comments into statistical stories. Without Google Analytics, managing websites is a philosophy, not effective collaboration. Healthcare needs artificial intelligence to filter, organize, and report patient stories as a collective, as a cohort.

Long surveys don't work. Patients want to provide detailed feedback about their healthcare experiences. We write hundreds of words about cars, beds, and pillows, and none of those things can help you beat cancer, heart disease, or diabetes. Doctors, nurses, and hospital administrators save your life, not beds, cars, or pillows. Patients want to help, but healthcare needs to understand the 1-9-90 Rule.

  • 1% of Patients will contribute meaningful content or join advoacy groups if asked and rewarded (see provide rewards below).
  • 9% of patients will share meaningful content contributed by the 1%ers.
  • 90% of patients will be harder to engage as advocates.

The 1-9-90 Rule explains why creating trusted communities is hard, fragile, and heavily dependent on a minority. Engaged, contributing minorities can and have changed the world, so there's hope for healthcare.

How Healtcare ASKs for Feedback is Half the Battle

Patients are increasingly technically sophisticated, impatient, and skeptical. Here are ideas sure to more than double your patient feedback while increasing detail, value, and response.

  • Own Words - ask simple open ended questions patients answer with their words. Ask patients to share stories.
  • Smartphone-Like - don't ask more than three questions.
  • Doctors, Patients, and Administrators - make sharing patient stories easier on the front end (the patient ask) and backend (using patient feedback by department, task, and across management levels).
  • Provide Rewards - creating changed basded on our feedback is the most valuable reward patients want.

Martin's Million Dollar Offer

PatientsVoices is an artificial intelligence tool developed by a friend who wants to help patients like me. After a lot of hard work and developing genius-level algorithms PatientsVoices sifts, organizes, reports, and feels patient stories. A few years ago I rode a bicycle across America to cure cancer. The Big C is still here, so I failed. We raised almost $100,000 and achieved a life-long goal, but it's time to do something bigger, to put my money where passion and advocacy live.

That's why we're working on rewarding hospitals using PatientsVoices and creating substantial financial rewards for healthcare orgranizations willing to include patient stories, willing to evolve from creators to curators and collaborators. With the right tools, passion, commitment, and collaboration we can fix healthcare one patient at a time. Stay tuned for more details about my million dollar offer.

Special Thanks

Thanks to Sarah Goodsen for asking great questions. I'm going to steal Sarah's Enagement Monday idea and that is the highest compliment I know how to pay.


Do you give your healthcare providers feedback? How and is sharing your feedback a positive experience?