Patient voices bring an added dimension to health care stories, but connecting with patients meeting certain demographics often can be more challenging than locating medical experts.
To find patients willing to share their experiences with readers, health and disease-related groups, like the American Heart Association or American Cancer Society are good starting points. Specify up front whether you’re willing to speak with a long-time patient or volunteer, or you’d prefer to talk to somebody who has a more recent diagnosis and is still learning how to navigate the challenges of their condition and the health care system.
If you’re focusing on health disparities among certain ethnic, gender and age groups such as African-Americans or seniors, advocacy organizations and their websites note not only can alert you to burning issues but can also suggest members with compelling stories to tell. For example, Heart Sisters is a great source of contacts to women dealing with heart disease.
Tapping into patient forums also can let you see which topics are most significant, relevant and provocative for that group. Contact the forum’s hosts and let them know you’re seeking sources. Usually you can become a forum member and post your request to the message boards.
Thinner Times, a forum for people who have had or are considering weight-loss surgery, has frank and varied discussions not only about the procedures but also general issues faced by severely obese people.
Pacemaker Club, a great site for patients with devices to manage heart arrhythmias, offers an insider look at cardiac pacemakers and implanted defibrillators. The Radical Age Movement gives voice to seniors with ageism-related issues, including health care concerns. Sisters Network can introduce you to African-American women who are breast cancer survivors.
Health systems and medical practices also can sometimes connect you with patients who have terrific, moving stories.
People who host blogs about their individual journeys with chronic illness often are willing to speak openly and in detail about symptoms and challenges. It’s helpful to set realistic expectations: If the blogger likely won’t be the centerpiece of your story, or you’re only focusing on a limited aspect of his or her experience, let them know in advance.
One caution: Some recommended patients may have already received significant media coverage, compared with someone with a fresher story to tell. A brief online search will reveal how much media and public relations exposure they’ve had.
Lisa Esposito, a health reporter for U.S. News & World Report, covers patient advice issues. She tweets at @lisaespo.
