Patient Groups Lead in Giving Voice to the Patient

At the recent Partnering for Cures meeting in New York, Freda Lewis Hall, Chief Medical Officer and Executive Vice President at Pfizer, quipped, “We’ve been talking patient engagement for decades.  Isn’t it time we got married?” A number of leading nonprofit patient organizations are demonstrating their commitment to the patient voice by saying “we do” to a variety of strategies, from patient ad boards to online communities. Here are some best practices we uncovered in conversations with nonprofits.

Bring the Outside In

Patient organizations such as the Lupus Research Alliance, The Michael J Fox Foundation for Parkinson’s Research (MJFF), the Multiple Myeloma Research Foundation (MMRF) and the COPD Foundation have established formal roles for patients within their organizations.  The MMRF was founded by a patient, Kathy Giusti, who is a powerhouse in patient advocacy.  Giusti currently is a board member of MMRF and sits on the White House Precision Medicine Initiative Working Group.

MJFF created a Patient Council in 2009 that meets twice yearly with its leadership to identify unmet needs, brainstorm solutions and weigh in on Foundation initiatives. The council’s 27 members also are active in recruiting for clinical studies and fostering strong relationships with industry, academia and regulatory agencies.

Both the MMRF and the COPD Foundation include patients in the governance of their organizations. Patients are on the board and on the medical/scientific advisory committee and integrated into decision making, says Jamie Sullivan, Vice President of Public Policy and Outcomes at the COPD Foundation.

Mine Online Communities

The COPD Foundation built 360 Social, an open community with more than 26,000 registered users, as a way to learn from patients.  They protect and guard this community so it continues to provide a way of learning without being intrusive to participants.

Through MJFF’s online observational study, Fox Insight, more than 4,000 people with Parkinson’s regularly share information on their experience with the disease.  The Foundation also has a large online community – nearly 750,000 followers on Facebook and an email list of more than 260,000.  These groups can be surveyed for their thoughts on everything from life with Parkinson’s to trial design.  The collective patient voice helps determine patients’ unmet needs and priorities, which are then communicated to researchers, industry and regulators.

Engage Patients with Broader Perspective

Finding and broadening the pool is a common challenge, so that groups avoid going to the well too often to ask the same patients to be advisors. The Lupus Research Alliance uses a survey with a series of questions to identify and screen participants for ad boards and other research. “We work very hard to match the patients to the objectives of the advisory board so it’s mutually beneficial,” says Diane Gross, National Director Advocacy and Programs, Lupus Research Alliance.  “It requires a lot of relationship building, really knowing these patients.”  Most organizations also work with a variety of academic medical centers to get a broader population of participants for research.

COPD Foundation has a state captain network to pull from for higher-level advisory needs.  Many of the state captains are involved in running independent listservs or social groups so they bring a broader perspective.  The Foundation is in the process of identifying interest and expertise areas of the state captain network so they can do better matching, making the process of finding patients more efficient.

Walk In Their Shoes

Patient groups say there are a variety of recruitment hurdles to engaging patients that require trust, patience and sensitivity. The organizations often act as a credible bridge for pharmaceutical companies wanting to reach out to patients.  “Some people don’t trust government and/or pharmaceutical companies.  But they tend to have more trust in their doctor, others with lupus and organizations like ours,” says Gross.

Disease-related challenges may prevent some patients from participating in an in-person advisory session. Companies sometimes want a very specific type of person – and quickly, according to Sullivan, but may not appreciate the challenge of recruiting without sufficient lead time. Another issue is compensation – for both the groups and patients. Groups sometimes are not compensated through sponsorship fees for finding patients, which can be a point of frustration. Patients, depending on the company policy, may not be compensated either.  This can create hardship for some patients particularly when they take a day off from work to participate in a meeting and lose income as a result.

Patient groups have helped companies better understand the nuances of the patient population and avoid missteps, too. “It frustrates me when we hear about patient surveys in lupus and you see that they’ve surveyed predominantly white women on the internet,” says Gross. “Lupus is a disease that affects many multicultural women as well as men.” Gross says that in New York City, 16 percent of their members don’t have an email address; 25 percent don’t have internet access at home. “Socioeconomics and demographics have a big impact on illness and create a different set of needs,” she adds.

All patient organizations agree that closing the loop by feeding insights back to patients after they have acted as advisors is important and just plain courteous.

MJFF notes that potential symptoms of Parkinson’s disease should be taken into account when organizing focus groups or ad board meetings.  They may need to start later in the day to ensure patients’ medications have taken effect and participants can be alert and engaged.  Frequent breaks are important as patients may need time to take medication or move around. Since people with Parkinson’s also tend to be older (average age at diagnosis is 60) and may have vision issues, font size for slides should be large.

COPD Foundation notes similar challenges, in part because people with COPD often are on oxygen. “In person is the gold standard but, for a population that is sick, there are times when you just don’t need an in-person meeting,” says Sullivan. The Foundation created COPD360Coach, an online education and support intervention and maintains a phone-based support line to provide solutions to people who can’t access support in person.  In existing and future clinical studies, they hope to see which forum provides the best avenue for information sharing for various patient types.

All patient organizations agree that closing the loop by feeding insights back to patients after they have acted as advisors is important and just plain courteous.  Even if the information is high level, follow up is key. “Patients want to know that their participation was meaningful,” says Gross.


As patients are more fully integrated into feedback loops, the impact of the patient voice is becoming more quantifiable. “We had a pharma company come to us when patient enrollment was slower than anticipated.   We coordinated a patient ad board as one component of their strategy to assess the situation; subsequent adjustments helped their ability to recruit on time,” says Gross.

“People are finally getting it.  At first it was something they had to do because of this general talk about patient-centeredness. But as people have integrated the patient, they learn things that are actionable,” says Sullivan. “We really appreciate all our partners embracing what patients think and need.”