Join a PACC and Become a Well-Prepared Patient, Advocate or Caregiver

A PACC is Not a Support Group-Although You May Very Well Find Support

Pulse Center for Patient Safety Education & Advocacy

Join a PACC

When:  The first Wednesday of the Month

Time: 7:30 PM Eastern Time

Are you making life-changing healthcare decisions for yourself or your family and aren’t sure of your options? Don’t know who to turn to?

Are you a patient? Are you an advocate? Have you cared for, or are caring for a family member or friend? No matter who you are, you probably have  experiences that others can learn from, and you can learn from others.

Patient Activation Through Community Conversations (PACC)

Here we:  offer solutions.  Share what has worked for you -  Everyone should share only as much as they want.  No pressure, just good conversation so we can learn from the experience of others.

PACC's are about being a patient or using the healthcare system.  People share their experiences with each other by choosing what they want to talk about or learn about from the experience of others.  Please don't come to give advice.  This is not the place to tell others what to do.

What would you like to talk about?  You can either tell the host in the chat box or tell the group when the program starts. Each month a topic is chosen or bring your own.   Pre-registration is required.

A PACC is not about your health.  It is about your health care, the experience leading up to good health.


Actual conversation with members of an HIV/AIDS support group

Facilitator:Someone here chose this topic – ‘Do you have a healthcare proxy and how did you choose someone?' Who would like to discuss this?’”

PACC Participant:I don’t have a healthcare proxy and don’t know how to choose someone if I don’t want them to know I am HIV positive. I would like to know what others have done.”

Do YOU  have unanswered questions about your health care? Ever wondered what you don’t know? PACC groups are the place to find out. They’re where people like you share what has worked, and what hasn’t.



Pulse Center for Patient Safety Education & Advocacy

Host a PACC for your friends, your family, your faith community, your business (at lunch or after work) for your support groups or any place people gather.  College students and high school classes can host a PACC too!  Call (516) 579-4711 to learn more or e-mail

Minimum participants should be 10 people.  Maximum 20

Choose a Topic or Bring Your Own


1_____Have you ever sought out a doctor for a second opinion?  How did you find that doctor?

2_____Do you write down your symptoms or try to remember them?  Have you had difficult experiences diagnosing symptoms?  Why?

3_____ Have you ever mistaken illness for medication side effects?  Have you ever had experiences with side effects?  If so, how was that discovered?

The Doctor’s Office

4_____What do you bring with you to the doctor’s office?

5_____What do you think is a reasonable wait at the doctor’s office? Have you ever walked out because you waited too long?  Did you make another appointment?

6_____What do you do if you get home and realize you have a question you forgot to ask?

7_____Have you ever continued seeing a doctor you didn’t like?  Why?

8_____Do you have trouble getting an appointment?  What is a reasonable wait to get an appointment?


9____Do you have a person as a healthcare proxy?  Why did you choose that person?

10_____Have you shared your wishes with the person listed as your healthcare proxy? How did they react?

11_____If you don’t have a healthcare proxy, why not?

12_____I know my rights as a patient but I think we should add………

13_____Are you concerned about your privacy on issues such as medical conditions and family involvement? Why?


14_____ Do you keep a list of medications with you at all times? Where do you keep it?

15_____ Do you know the names of all your medications? If not why?

16_____ Do you read all the warnings about your medications, including over the counter meds (OTC)? Have you ever been surprised?

17_____ Do you speak to your pharmacist about your medications?  What do you speak about?

Navigating Healthcare

18_____How do you choose a hospital or urgent care practice?

19_____Do you think the urgent care offices are useful?  What have you used them for?

20_____Have you ever filed a complaint with a hospital?  How did you start and where did you send it?

21_____Do you read your bill?  Do you understand it?  Have you ever disagreed with your bill? If so what did you do?

22_____Do you ask prices before getting a procedure or seeing the doctor? If so, what has that experience been like?

23_____Do you use a doctor, nurse practitioner, physician’s assistant or someone else?

24_____Have you ever looked for hospice, rehab, nursing home or other services?  How did you get started?


25_____ Are you or have you ever been a caregiver for someone?  Was it your choice or did it just happen?  Do you have any learned experiences?

26_____ Did you get support for yourself as a caregiver?  How did you take care of yourself?

27_____ Did you ever get frustrated or angry as a caregiver? What did you do to help yourself?

28_____ Did you ever have to make changes in your holiday schedule as a caregiver? What was that like?

29_____ Do you go to the doctor with your elderly parents or young children?  Do you feel like you are welcome?  What is your role when you go and did you discuss your role before going?

30_____ Have others cared for you?  Does that frustrate you or make you happy?

31_____ How have you shown appreciation for those who care for you, both professionals and family?


32_____Do you keep records of your procedures such as mammography, colonoscopy etc.? Where do you keep your records?  (computer? notebook? wallet? elsewhere?)

33_____Do you always call for the test results?  Does the doctor’s office encourage you to call?

34_____Have you ever agreed to a test or procedure that you felt was not needed? Were you glad you did?

35_____Did you ever say you would get a test and then not go? Why? (Cost? Fear?)

36_____Do you read the consent form carefully before signing?

Hospital Stay

37_____ Do you find out about visiting hours before going to see someone in the hospital?

38_____ Were you ever told you had to leave a family member or friend?

39_____ Do you help yourself or your hospitalized family member with supplies such as blankets or water?

40_____ Have you ever had a problem with food services?  How did you handle it?

41_____ Have you ever complained about the food? What was the problem and how was it fixed?

42_____ Have you ever asked a doctor or nurse to wash their hands? How did that go?

43____ Have you ever raised a concern about the care someone received at the hospital? Who did you speak with? How did you know who to speak with?

44___ How long do you visit someone?

45___ What do you do when you visit someone?

46___ Have you ever been in the hospital and not want visitor?


47_____ Have you ever been made to feel unwelcome by your doctor or staff?  What did you do?

48_____ Did you ever think your doctor did not have your best interest as his priority? What did you do?

49_____ Have you ever gone up the chain of command in a hospital to get service? Whom did you see?

50_____ I would like to speak about something not listed

Registration to this and all Pulse CPSEA Zoom events is required. Speaking about medical care can become a very sensitive topic so we ask all participants to review the Disclaimer Notice  before registering. 

For more information or to host a PACC around a specific group of people (age, medical condition or even family or faith community, etc.)  Call  516.579.4711.  We encourage a minimum of ten people and maximum of twenty.

Pulse Center for Patient Safety Education & Advocacy