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pharmaphorum.com http://www.pharmaphorum.com/2011/09/08/patient-perspectives-kathi-apostolidis/

How do you think pharma can do to really understand

patients needs?

Patient perspectives: Kathi Apostolidis

Posted 8th September 2011 in Articles, Interviews | Add a comment

Rebecca Aris interviews Kathi Apostolidis

In this new series we will be hearing f rom patients on t heir own unique

experiences and perceptions of pharma.

In this, the first of the series, we speak with Kathi Apostolidis , a breast cancer

survivor f rom Greece. A vocal e-patient, she is act ively involved with patient

organisat ions and will be speaking at t he upcoming

2011 European Mult idisciplinary Cancer Congress in Sto ckholm later this

month.

Kathi speaks with us on what pharma can do to improve perceptions of them, and how pharma has more

than just f unding to o f f er patient o rganisations.

Interview Summary

RA: Hi Kathi, Id like to start by asking you to tell me about your experience as a patient.

KA: I can better cope with dif f icult health s ituations, when I understand the problem and how my doctor

and I can cooperate to wards a cure.

The lessons I have learnt are:

Learn about your condition

Reach out and talk to ot her patients, f riends, and relatives and share experiences

Prepare yourself f or your medical appointment, dont hesitate t o quest ion your doctor

If your symptoms persist, dont hesitate to retell your sto ry to the doctor and share your concerns.

Follow your doctors inst ructions, if you do not recover, always ask him f irst before abandoning the

therapy prescribed

Under the const raint of the 10 minute medical appointment in the public healthcare system, your docto r

does not have the time, the energy or even the t raining to f ully explain to you everything about your

condition. The lesson Ive learnt is t hat go ing unprepared to a medical appointment is bad f or your health.

going unprepared to a medical appointment is bad for your health.

RA: Have you been involved with any patient organisations?

KA: Soon af ter my f irst breast cancer in 1990, I decided to join the local breast cancer patient

organizat ion and see how I could help upgrade the services and practical resources f or newly diagnosed

patients . I was amazed with the richness o f disease inf ormation, practical inf ormation and helplines I had

f ound on the internet , visiting the websites of Y-ME, NBCC, CancerResearch, BreastCancerAction, etc.
http://www.ecco-org.eu/page.aspx/2488http://www.pharmaphorum.com/2011/09/08/patient-perspectives-kathi-apostolidis/http://www.ecco-org.eu/page.aspx/2488http://www.pharmaphorum.com/2011/09/08/patient-perspectives-kathi-apostolidis/#commentformhttp://www.pharmaphorum.com/2011/09/08/patient-perspectives-kathi-apostolidis/


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and wanted to work to wards adopting these services in Greece.

I have joined several Greek cancer patient o rganisations volunteering my prof ess ional services on

marketing, management, Public Af f airs, HR and adopt ion o f social media. Recently, I co- f ounded and

chaired the Cancer Patient Rights Advocacy Program of f ering psycho- social support t o cancer patients.

The Program aims to raise awareness of patient rights and the exist ing legislation. I am also a member

of European and US cancer patient organisations and work with them on specif ic projects.

RA: How could patient organisations cooperate with pharma?

KA: Pharma could help patient organisat ions to grow and develop meaningf ul patient services. Pharma

of ten f inances projects , presented by patient o rganisations, without requesting a f unding proposal and

not checking af terwards whether the f unding was used f or the purpose requested. There needs to be

complete transparency of how funding of patient organisat ions is conducted and whether funding really

serves actual needs o f patients.

It should be noted that many European patient organisations actively seek to cooperate with pharma

companies, since it seems that it is their sole f unding source.

RA: Could pharma assist patient organisations in any other way besides funding?

KA: Pharma could also help patient organizat ions in knowledge transf er. Patient o rganizations would gain

a lot f rom training in basic management, marketing, accounting skills. This could be achieved thro ugh

of f ering seminars or other resources on basic management and f inancial management o f non-prof its or

through sponsoring participation of patient organisation members to continuous education / training in

management / leadership seminars.

Pharma could also assist patient o rganisations by of f ering credible, unbiased, independent disease

specif ic inf ormation in their native language. Patient o rganisations of f er only very basic disease specif ic

information rather than the in-depth knowledge that the empowered patient loo ks f or.

RA: Would you like to see pharma getting more involved with society?

KA: In an ef f ort to prove their good citizenship, many pharma companies collaborate with the local

communities in which they operate, funding projects of common interest, e.g. of f ering home care to elder

and children patients, sponsoring educational events, of f ering equipment f or a playground, pharma staf f

participating in local eco-campaigns, sponsoring disease awareness events, funding non-pro f it

organisations, etc.

Pharma has the means to offer to society in many ways and personally, I would welcome such

activities.

There are many ways, in which pharma could get more involved with society, but the quest ion remains

whether they really want it . Pharma has the means to o f f er to society in many ways and personally, I

would welcome such act ivities.

RA: What could pharma do to improve how it is perceived?

KA: Patients perceive pharma as a non- transparent healthcare stakeholder because pharma does not

openly publish research, clinical trial results , advanced inf ormation o n new drugs or detailed inf ormation

about adverse events. Patients f eel that pharma hides so me aspects o f medicine inf ormation f rom them.

In addition, the high prof its that pharma makes in Greece do not appear to be in line with their claim of

big losses due to the long overdue set tlement by the state of medicines deliveries to public hospitals.

The recent withdrawal of medicines deliveries by pharma in order to push the government to expedite theset tlement o f overdue debt, had resulted in the disappearance of key medicines f rom pharmacies. It was

considered purely unethical to let diabetes, cancer and other patients without critical medicines.

It is not a secret t hat pharma does not have a pos itive image in Greek society. If pharma wants to be


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perceived positively by Greek patients and the population in general, it will have to patiently rebuild a

trust -worthy reputation of partners in health.

RA: Do patient organisations use social media to promote their cause?

KA: The majority o f European patient organisations in the cancer community use social media very little if

at all. This is not only due to lack of experienced staf f but mostly to a mistrust and lack of understanding

of what social media could of f er. Directors and management tend to believe that so cial media is f utile, a

waste of time and that engagement is no t something that concerns them. They see it as an o f f ice task

which can be entrusted to another staf f member or outso urced to a third party.

I do not believe that pharma is actually ready and willing to engage with patients and patient

organisations

The few patient organisat ions involvement with social media has been mos tly repetitive announcements,

as o pposed to engagement. Success in so cial media tends to be measured so lely by the number of

f ollowers and some organisations despite the lack of engagement have a cons iderable number of

f ollowers, with very few of them being active. This is considered suf f icient and de-motivates any ef f ort

f or improvement.

During the last three years, European umbrella organizat ions have begun to acknowledge the importanceof so cial media. But newcomers need to be better educated with hands-o n workshops. If someone has

little knowledge of the Internet and is not guided through social media channels s tep by st ep, he will

rarely use them on his o wn.

I cons ider social media to be an excellent to ol f or healthcare advocacy, awareness campaigns and

f undraising and I am honoured to have been invited to present at the 2011 European Multidisciplinary

Cancer Congress in Stockholm. It will be a great opportunity f or health prof ess ionals and patients to

participate in a workshop that aims to initiate participants in the use of so cial media.

RA: how do you think pharma could engage with patient organisations using social media?

KA: Pharma could engage with pat ient o rganisations by f ollowing common sense and generally accepted

business practices. Social media, even in an industry as highly regulated as pharma can be a sat isf ying

so cial encounter.

Pharma is still hesitant t o use social media despite t he noise about FDA / corporate social media

guidelines. I do not believe that pharma is actually ready and willing to engage with patients and patient

organisat ions, despite examples to the cont rary. When pharma learns how to be social then it will be

easy f or t hem to engage with social partners, such as patient o rganisations . Af ter all, health is social.

Pharma has direct contact with only one or two persons in every patient o rganisation, who may transmit

personal, biased views. Pharma would only gain, if it considered engaging directly with patientorganisat ion members in an open and f rank conversat ion about their concerns with the disease, their

therapies, and the adverse events they f ace. There are many ways to engage with a greater number of

members o f a patient o rganisation beyond the Chair and one-t wo Directors , and social media can be an

easy, widespread, direct means.

These small very active online and offline patient communities, grow in the shade of surveys on

patient movement.

By not engaging in so cial media, pharma limits its knowledge o f emerging trends in pat ient groups. During

the last f ive years, several of f line and online patient communities and groups have emerged. This is a

result of the f ast expansion of the internet and social media but also a result o f the high cos t o festablishing and running a formal organisat ion. Members of these groups opt f or directness , immediate

availability o f medical and other information o f importance to patients. They of ten st art their group

through online meetings with other perso ns with same disease and by sharing similar problems. These

small very active patient communities grow in the shade of surveys on patient movement.


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Another development is the gro wing number o f independent pat ients who like to be heard and get act ive

in social media to share their experience and to advocate f or change in healthcare. This rise of the e-

patient highlights that t here are patients who want to be heard, advocate and share their experiences.

The next patient pe rspective inte rview will be live on pharmaphorum on 22nd Septe mber.

About the interviewee:

Kathi Apostolidis is cancer survivor and an active patient advocate. Kathi has been internet savvy since

the early nineties. She has used the internet and online patient communities to educate herself on breastcancer, healthcare and patient advocacy issues. In 2006 and 2008, she successf ully used internet

resources and online / of f line rotato r cuff tear patient communities to learn about o ptions and

alternatives f or shoulder and rotator cuf f tear surgery.

Kathi is a member of cancer patient o rganizations in Greece and internationally, and has served as

Member, Chair of st anding committees, t rainer, speaker, campaigner. She has been inst rumental in

developing a guide of social insurance & welf are benef its f or cancer patients , training volunteers to

staf f the helpline and in sett ing the bases f or a robust cancer patient rights advocacy program. Kathi

blogs on healthcare related issues and is act ive in so cial media in healthcare. Prof ess ionally, she is a

Public Aff airs Consultant.

Linked IN:

http://www.linkedin.com/in/kathiapostolidis

twitter: www.twitter.com/kgapo , www.twitter.com/opnHealth

blog:

http://epatientgr.wordpress.com

facebook:

www.facebook.com/kathiapostolidiswww.facebook.com/# opnhealth

What do you think pharma can do to really understand pat ient s needs?
http://www.facebook.com/#opnhealthhttp://www.facebook.com/kathiapostolidishttp://epatientgr.wordpress.com/http://www.twitter.com/opnHealthhttp://www.twitter.com/kgapohttp://www.linkedin.com/in/kathiapostolidis

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