Kelley Connors

This post was written by Kelley Connors, President, Founder, Real Women on Health!

Patient advocacy has a new meaning for me – for years I was only looking at one piece of the advocacy puzzle. Today, I see the whole picture from the patient as well as organizational standpoint.  One’s view certainly intensifies as your passion rises when your own family member or friend needs help navigating the healthcare system to receive the right care.

For years, I’ve been behind the scenes of educational campaigns that patients benefited from with pharmaceutical industry support; think Go Red for heart disease awareness among women, and Susan G Komen’s grassroots efforts to increase public awareness about the importance of self-breast exams and mammograms.  With women’s lifetime risk of breast cancer being one in eight and heart disease the leading cause of death among women, I’ve been hired as a PR specialist to develop advocacy campaigns for companies to help women gain the knowledge they need to effectively prevent and treat a myriad of women’s health conditions.

But, things change when it’s your dad who has chronic myelogenous leukemia (CML).  And, you start to dig in to find out as much as you can about the condition, how to pay for a drug that costs $8,000 a month, and how to coordinate care when oncologists – as valued as they are – may miss concomitant conditions that impact how a patient feels and responds to CML treatment.

Here’s what I’ve learned:

Being an advocate is about being curious, passionate and a seeker of information. For example, patient medical records are full of data that will help you close the gaps in care, should you or your family member need hospitalization.   Can you access your medical records quickly should you need to make a life or death decision?  The federal Health Insurance Portability and Accountability Act, which governs access to medical records, gives hospitals and doctors 30 days to respond to a request for medical records, although some state laws provide for a shorter time frame, and in urgent situations, such as a transfer to another hospital, it’s customary for hospitals to move more quickly.

Be prepared to make your request in writing and, to shorten the time frame, ask your physician’s office (the new physician in the case of patient transfer) to request them.

Remember, medical records are yours and they contain the doctor’s notes and instructions as well as diagnoses that often are communicated but likely not “heard” or “understood” by the patient or family.  

One way to get your medical records more quickly is to seek out providers who use electronic medical records so the records can be e-mailed to you. Some providers even have an electronic portal so you can read your records anytime you want on a secure Internet site.

In summary, it’s one thing to work in healthcare PR, creating the patient advocacy programs for large pharmaceutical companies but when its your family member who needs help, the word patient advocacy fills in with passion and purpose which is important but never enough.  You need to understand the system and how it’s broken to identify the gaps.

From a PR point of view, patient advocacy often helps pharmaceutical companies educate patients about a specific disease or treatment, but don’t forget their motives. That’s why is you ever need a patient advocate “on the ground”, it would be a good idea to check out Disruptive Women Trisha Torrey’s web site, AdvoConnections. (http://www.advoconnection.com/index.asp)

She is the ultimate patient advocate and has a wealth of personal experience, knowledge and connections to help you find and receive the best care possible for yourself or family member.  This is what I am learning is the meaning of patient advocacy.

This entry was posted on Thursday, September 2nd, 2010 at 8:06 am and is filed under Guest Posts, Patients, Patients' Rights. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.