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Access to Reliable Information

The Cancer Insights Panel* highlighted access to reliable information as a potential area of improvement during, and after, an experience of cancer. Commenting on their own experiences and the experiences of people they know that have been affected by cancer, the key themes relating to accessing reliable information were:1

Medical Information
Information about the impacts of cancer
Information about patient support groups

Below are the panel members’ insights regarding access to reliable information during an experience of cancer and their asks moving forward.

Hear from Diane, who describes her experience with secondary breast cancer compared to when she was diagnosed with primary breast cancer 25 years ago

Medical information

What the panel members said…1

What patients are asking for…1

Tab Number 3

  • “It would be more useful to have a written record of the intended plan for check-ups going forward to help patients feel more in control – e.g. tests once a month for a year, or once every three months for the year after, etc.” – patient, acute lymphoblastic leukaemia 
  • “Treatment plan should be shared between GPs and the hospital to allow for better patient access.” – patient, bowel cancer 
  • “I am still trying to get information in alternative formats… after [the hospital] being told it is not appropriate to give written information.” – patient 
  • “[We need] more access to clinical trial information. I came across it by chance.” – metastatic breast cancer patient
  • “Patients need to know where to find clinical trials, etc. [There are] different treatments at different centres… patients would be willing to travel.” – anonymous 
Easy access to their medical information 
  • Some patients struggle accessing their own medical information and don’t feel like the information they they need is at their fingertips. 
  • The panel members shared a desire for better access to medical information, including clear next steps and timelines, during an experience of cancer. 
Medical information provided in appropriate formats 
  • The panel members identified a need for better consideration of patient needs regarding information formats. 
  • Examples of groups with particular needs include, but are not limited to: patients for whom English is not a first language; patients with visual impairments; patients that are unable to digest certain formats.
Access to clinical trial information 
  • While not every patient will be interested in clinical trials, there is a clear need for information to be shared as an option for those who may be interested and eligible. 
  • Having clinical trial information provided by an HCP could ensure the patient is accessing reputable information. 

Information about the impacts of cancer

What the panel members said…1

What patients are asking for…1

  • “Access to important, relevant information is vital to support patients; lack of access could cause further problems such as mental health issues.” – patient, bowel cancer
  • “I used First Steps for a while – I find this a very basic service and, once your allotted time is up, then it wasn’t then pushed for anything else.” – patient, breast cancer 
  • “At end of life care there were various things my brother needed (e.g. water bottles, medication for dry lips, etc.). The family discovered these themselves and bought the items. It would have been good to know what happens and how to make my brother feel comfortable.” – carer, bowel cancer 
  • “I wish there had been more materials or help to tell my children as all they heard was death sentence.” – patient, metastatic breast cancer 
  • “No longer able to do the same job. Employer won’t adapt the role. Unemployed. Reduced income.” – patient, head and neck cancer 
  • “[Would like] more info on your rights, as some companies expect you to work full time while having treatment & everyone reacts differently.” – patient, metastatic breast cancer
Access to relevant and up-to-date supportive information following a cancer diagnosis
  • Some panel members shared the view there was too much information – sometimes conflicting – while others felt there was a lack of direction on where to go for information. 
  • Some panel members agreed a single website, which they can be sure is up-to-date at the time of reading, would serve to fill this gap. 
Support in telling loved ones about a cancer diagnosis
  • Telling loved ones may be one of the hardest part of someone’s experience with cancer and this was identified by the panel members as an area in which some need more support. 
  • From signposting to information on potential ways to broach the conversation, to sharing contact details for patient groups providing emotional support, there are ways in which patients can feel more prepared. 
Better awareness of available legal, financial and employment support 
  • The panel members shared experiences where patients struggled to find support for their legal, financial and employment concerns, leading to stress and anxiety issues. Therefore, signposting patients to available resources ahead of time can help to avoid additional stress. id any additional stress, allowing them to focus on their wellness. 

Information about patient support groups

What the panel members said…1

What patients are asking for…1

  • “I have found a lot of help and support with online communities but didn’t find them until a year after my treatment. It would be helpful to be signposted to these websites at the time of diagnosis.” – patient, colorectal cancer 
  • “ I’d like access to some support info… my hospital’s idea of support is one A4 poster on the wall about some online thing.” – patient, metastatic breast cancer 
  • “I would have loved a face-to-face support group in my area but there is nothing available. Without the Facebook group I would have felt lost. You really need to speak to people who have experienced the same thing.” – patient, colorectal cancer 
  • “I’ve sought support through the Bowel Cancer Support Groups but you have to find these yourselves; there should be better signposts for support.” – patient, colorectal cancer 
  • “For many, the opportunity to engage with people who have been there before was a benefit  (e.g. through online peer support groups or face-to-face).” – patient, colorectal cancer
Provision of information about patient support groups – from day 1
  • Support groups were identified by many panel members as an important tool for people impacted by cancer, with a need for support groups identified by patients and carers alike. However, from the panel members’ responses, it’s clear not everybody with cancer receives information about these. 
  • There was a desire for support groups to be discussed as early as possible on in the cancer journey. 
Access to Reliable Information (PDF download) 

Download a one-page summary of the Cancer Insights Panel's commentary and key takeaways surrounding wellbeing during an experience of cancer

 Download PDFLoading

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 Family, Friends and Caregivers

Insights surrounding the experiences of family, friends and caregivers of people with cancer

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Insights surrounding patients' confidence in the healthcare system during an experience of cancer

Read MoreLoadingCancer Insights Panel

*The Cancer Insights Panel is a Pfizer initiative developed to gather the perspectives of people impacted by cancer. The first panel, which ran between June 2022 and January 2024, was formed of 30 people who were carefully selected based on their ability to share the needs and voices of a range of people affected by cancer, including patients and carers alike. This resource has been developed based on insights shared by panel members. Pfizer has reviewed and compiled these insights, to identify potential areas for improvement during an experience of cancer.  All panel members have consented to the sharing of their contributions. Direct quotes from panel members are presented in quotation marks.

Reference: 

Pfizer Ltd. Data on file. REF-UNP27004.
PP-UNP-GBR-8325. October 2024

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